Restaurant Challenges

Stock photo from freepixels.com

Restaurants are proving to be a bit more difficult these days. The problems which are arising are things I never noticed before and I know most restaurants, having worked at some myself, probably don’t notice are a problem either. I think the key to being more welcoming to people of all different abilities is having more knowledge of the challenges others have that we may not know about if we have not experienced it ourselves. So, here is a list of the challenges I have found recently:

1. Hosts, when you are taking people to their seat, please look behind you to see if the person you are seating can walk as fast as you can. Often the host is all the way across the restaurant waiting awkwardly for us to catch up with him or her.

2. Restaurants are much louder than I ever noticed them to be. We can barely talk now at the table because both Mom and Dad have a hard time hearing us. And when it is loud, Mom gets sensory overload and becomes confused, nervous, and overwhelmed. There is not much a restaurant can do about this, so we can just try to eat out at less busy hours.

3. Mugs with a hole in the handle the size of a quarter are impossible to use for people with weakness in their limbs or who have hand tremors.

4. Some restaurants only have booth seating, which is problematic for people with movement issues, like mom’s Parkinson’s. And looking into the future, I rarely see options for people with wheelchairs either. Having some table seating, and not tall tables with chairs you have to climb into, is a wonderful option. 

5. For the love of God (or that which you see as divine), please do not cover your booths in velvet. People who have a hard time moving can barely get into a booth as it is, using velvet on the seats makes it impossible to slide into the booth.

Blessings,

Rev. Katie

The Knitting Gauge

In knitting, before you start any project, you knit a gauge. The gauge is a small square of fabric you knit in the pattern of the project to make sure that you are using the right size yarn and needles so your project comes out the right size. You should never knit anything without first knitting a gauge. For those of us who have tried to skip knitting a gauge, we know that most of those projects never turned out right in the end.

In knitting you use a gauge to predict what will become of what you are making. In life I see knitting as a gauge for Mom’s illness. I was able to go knitting again with Mom a few weeks ago and it reminded me of how as her dementia and Parkinson’s has increased, her ability to knit has decreased. 

Mom is really no longer able to knit because the patterns are too confusing, even making a stitch is confusing, and her hands shake too much to hold the needles well. However, her wonderful friends don’t mind. They welcome Mom just the same as always and it does not matter to them that she has taken out the same ball of yarn and needles for months and never really used them. They are an amazing group of women, fittingly called the “Cultured Purls.” (Purl is a term for a specific stitch in knitting.)

Jeffrey, his Bakugan "Dragonoid", and me with our blankets.

Mom made me a blanket in about eighth grade, and I took it to the group to be repaired because it has a hole in it. This blanket and the one she made my son remind me of what Mom used to be able to do and they show how her abilities have changed so much over the years. Just three years ago she was still able to knit a blanket, even if it took much longer than it used to. A year ago she was at least able to slowly knit something small like a scarf. For months now she has not knit a row of fabric.

While Mom’s ability to knit has been a gauge of her progression, the knitting group and Mom’s knitted items that we have are a gauge for how we care for one another. The knitters always welcome and help Mom and love her at every stage of her life. The gauge of their love for her is never ending. The blankets my son and I have are everlasting reminders of Mom and how much she loves us, which too is never ending.

I think it is important for us to remember that even if our abilities change, our love for each other still exists. For the person with dementia, Parkinson’s, or any other illness, it means you can still be part of many of the groups you were in before, even if you can no longer participate in the activity. For those of us who are their friends and loved ones, it means we can always remember to welcome them at whatever stage they are at. And lastly, don’t forget to document, through pictures and/or journaling, the memories of the time you have together. At times those “hard copies” of the memories may be very comforting to us all.

Blessings,

Rev. Katie

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

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

Manicures With Mom

Once a week I give Mom a manicure. I like this time with Mom because it gives us a regular routine of spending quality time together. Sometimes we have to build these moments into our life, moments when we are just present with another person without the distraction of people or television. When we do not consciously make the time, we often lose the opportunity to really connect with others. I learn the most about how Mom is feeling when we have this one-on-one time. I am glad this small ritual gives us these moments of greater knowing and understanding of one another.

Painting Mom’s nails also provides me with a lesson in life. When I hold her hands, with the absolutely perfectly smooth and soft skin I have always wished I had, I try to steady her tremors. What I noticed though is if I attempt to hold her hand steady, I actually make the tremors worse. It is as if her hands are trying to push back at my attempt to hold them still. This has been a good learning experience for me to stop trying to control life and live in the moment, accepting things as they are. Sometimes Mom gets annoyed with the tremors and apologizes for them. I keep telling her it does not matter if her hands shake, it is not a problem. I want Mom to know that I and other people will love her and care for her no matter what happens. There is no need to apologize for who you are or what is happening to you. We will be there to paint your nails, help you get dressed, or do whatever else you need.

And there is just something about human touch that is healing and important. When my husband was taking pictures for this blog post, we did many different poses. Most of them were with my hand over Mom’s and for some reason, none of the photos really looked right. Then this photo pictured here jumped out at me as the correct one. My hand over Mom’s did not look right, but this one, with her hand over mine does. It reminds me off all the times Mom has reached out her hand to take care of me. To hold my hand when I was scared or pat my hand to remind me she is right next to me. This was the right photo which showed our relationship and our personalities. Mom is the one with the beautiful understated yet elegant fashion with the subtle nail color, and I am the one with the love of bold colors such as black with purple sparkles.

It is amazing to me how one small act in life, which probably takes a half hour a week, can teach me so many lessons and reflects so much about who Mom and I are.

Blessings,

Rev. Katie

The Great Edamame War of 2010

Edamame in flight. There is an edamame in the air between Jeffrey & Mom

It started out as a nice quiet dinner of spaghetti tacos and edamame. As Jeffrey tried to pick up an edamame on his fork, it launched into the air towards Papa. To which Jeffrey laughed hysterically and Papa said “If you really want to get some height on that, you have to do it this way.” And he put an edamame on the handle of a fork and told Jeffrey to hit the top of the fork. Jeffrey hit the fork and sent the edamame flying across the table.

And that is how the Great Edamame War of 2010 started.

Jeffrey was launching edamame into the air aiming at targets, such as Papa and the water glass. We were all laughing and Jeffrey was cracking up so hard that he couldn’t breathe. We had edamame on the floor, in the water glass, and in our laps.

When it started, at first I told Jeffrey to stop flinging edamame because it had been a hard day for Mom and she is usually not one for messiness and chaos. However, she joined in on the fun, putting spaghetti on her nose as if it were a worm, and had a really good time.

One of the difficult aspects to Mom’s illness is that it is so unpredictable. For quite a few days, Mom was doing better than usual and was in a great mood. Then, for unknown reasons, she became much more confused. The confusion and excessive fatigue understandably increase Mom’s depression and frustration. She did not want to do anything or go anywhere, and she was very annoyed.

I had no idea one of the things that would cheer her up, even if it was just for a short period of time, was a food fight.

This illness is just so unexplainable and effects each person differently. We have no idea when Mom will have a good or bad day. Sometimes she remembers things, other times she does not. Sometimes she is happy, sometimes she is depressed and angry. We have no way to predict what will happen, and no way to fix what is going on.

When things are not going well I often worry and feel a need to keep my son quiet and behaving “properly.” In reality though, it is his innate joy of life, his rambunctious childlike nature, that helps Mom. His ability to have fun allows us all to bring out our inner child, which sometimes is just what we need.

Blessings,

Rev. Katie

"That Sucks"

At my first retail job I remember getting reprimanded by my boss because I used the term “that sucks” with a customer who had told me some story with an unfortunate ending. Ever since that time, I have known how crass that phrase sounds and I try not to use it. However, there are times in life where this is the only phrase that can capture what someone is going through.

So, what I have to say today is “dementia sucks” and often everything associated with it sucks. Who taught me that? My Mom. My Mom, who is always proper and well spoken says it sucks. I love when she does that, when she is totally honest about what is going on.

Mom has been extremely fatigued for the past few years, and the fatigue is getting worse. On most days Mom is up for a few hours in the morning, sleeps all day, and is up again from late afternoon until after dinner. She is SO tired. Today she asked me what could be making her so tired, and I said it is just part of the disease, to which she replied “that sucks!”

I hate that so much of the dementia and parkinsonism is just something we can not change or make better. We can’t give her medicine to make her less tired (trust me, we have tried.) No medicine completely gets rid of the tremors, medication has not helped her memory or cognition. The random back pain and other skeletal discomforts, which we have now learned are common in parkinsonism, can not be stopped. For the most part, we just can’t fix any of it, and all we can do is manage it.

Management means that most days Mom will sleep all day. Exercise and diet do help with cognition and the Parkinson’s tremors, so we try to keep up with that. Mom tries to socialize because that is fun for her and decreases depression. We repeat things for her and help her find the words she can not remember. We manage the best we can because in the end, dementia sucks and there is not much we can do about it. Well, at least we can be honest with each other and laugh about it when we can.

Blessings,

Rev. Katie

Quote of the Day

Bradykinesia, or slowness of movement: a common symptom of Parkinson's disease. Common activities, such as getting dressed or bathing, may take a patient several hours to complete.

- Parkinson's Disease: Overview. Handout from the Cleveland Clinic's Health Talks series. October 9, 2010.

What Happens at Night

Actually, I don’t really know what happens at night with my mom because their bedroom is on the first floor and we are on the second. But I know that sometimes when I am watching TV late at night and they are sleeping, I hear my mom screaming in terror at something she sees but is not real.

I know from Mom and Dad that Mom has hallucinations which are much more prominent at night than during the day. Sometimes they are scary, sometimes they are not. But much of the time, my Dad is awake and trying to talk to her so she calms down. Mom does not usually remember these “conversations” and she remains half asleep. Hallucinations are common in people both with dementia and Parkinson’s.

Often the hallucinations are not so much of a problem, Dad and Mom even joke about how “busy” she is at night. I noticed it is a problem today though because today Dad is in what we call a “funk” in our family. You know, those days when you are in a grumpy mood and you don’t really know why. Well, I guess Dad was up almost all night talking to Mom and her “friends” and he is exhausted today. No one functions well when you are that tired.

I didn’t realize until today how much I depend on Dad. I guess I have this idea that as long as he is happy, everything will be ok. I think that I get scared when Dad has a hard time because he is someone who has taken care of me. Even if he was not medically stable at times, he has usually been emotionally rational and strong. So when he is having a bit of a hard time, I worry that something must really be wrong. I am living in the house I grew up in, where as I got older, no matter what happened, Dad remained level-headed and rational. Dad took care of me, and I sometimes I forget I am not just his child anymore.

I think that is one of the things which can be hard about moving back in with your parents when you are older, especially if it is the house you grew up in. You have to re-define your relationship as more than only parent and child. We are now both adults and I can care for Dad, just as he cared and cares for me. I think I need to remember that my Dad is not indestructible. Hopefully I can help Dad, as he has cared for me, when he needs it.

Blessings,

Rev. Katie

Welcome to our House

This is the house I grew up in, since the day I was born. It has changed a lot over the years in order to accommodate our family at different stages. My parents put an addition onto the house about fourteen years ago so we could have more space for our large family at Sunday dinners. They put in a therapy pool five years ago so my mom could exercise, even with her heart condition. Last August my parents turned part of the addition on the first floor into a fully accessible bedroom and bathroom for my mom.

This is now the house that my husband and I will raise our six year old son in, and probably the house my parents will never leave.

This house has seen new babies, pets, numerous weddings, an ordination, anniversaries, cancer, various illnesses, worry, arguments, and immense joy.

In this house, my mom took care of me, my four siblings, and her grandchildren when we were sick. My husband, son and I moved in a year ago and we are here to help care for her as she lives with this illness. Well, really, we are all here to care for each other because even though Mom has dementia, she still has much to contribute to this family and world.

This blog is a reflection on what it is like to live in a house with three different generations trying to deal with dementia. I am writing this blog with the permission and enthusiasm of my mom, dad, husband and son. We realize that what one of us does affects us all and in that spirit, we try to be as collaborative as possible.

We have a covenant in our house, a promise of how we will live together. It is a covenant which is adapted from a popular Unitarian Universalist church covenant written by James Villa Blake:

“Love is the Spirit of this family,
and service is its law.
This is our great covenant:
To dwell together in peace,
to seek the truth in love,
and to help one another.”

We believe that help extends outside the walls of our house and we hope this blog helps many of you out there dealing with the same thing.

Blessings,

Rev. Katie