How Does Your Faith Help You?

Rehnberg Memorial Window @ Unitarian Universalist Church of Rockford, IL

I was recently talking with other caregivers of people with dementia/Alzheimer's and many of them commented on what a support their faith is to them. Some expressed that they believe God has a purpose in all things and they trust that purpose. Some said they pray for things like humor in hard times, or patience to help them understand better. Some said they make a point to find the blessings in the midst of this illness.

For me, my I find my faith helps me accept what is right in front of me rather than wishing things were different. My faith helps me remember that all we have is the present moment and if I can learn to stay in that moment, I can truly enjoy what good is happening, because there is always some good somewhere. My faith also shows me the great love that exists in this Universe, lived out by communities of caring people who help me and my family along this path.

How does your faith help you?

Blessings,

Rev. Katie

Little Quirks

I have noticed that Mom has developed some little quirks over time that come with her dementia but I rarely hear people mentioning such things in the books I read. I thought it might be helpful for people to know a little more about what can happen when a person has dementia and parkonsinism which comes with hallucinations.

I have written about Mom's hallucinations before, such as seeing a car drive into a grocery store, or seeing people in the house who are not there. Mom has always been quite aware of these and just asks us if we see what she sees. If we don't she knows it is a hallucination and she tries to ignore it. (Actually, I am quite impressed with how Mom handles the hallucinations as I would find that quite scary.)

Recently though she has been fixated on seeing certain things over and over again. I am not sure how much of this is the hallucinations and how much is the trouble she has with her eyesight, but either way, it has become a pattern now.

For months Mom has been insisting that someone is putting strings or worms in her food. This is much harder for her to understand is not actually there because she can pick up the piece of food and show us where she sees the string. We tell her we can't see it, but she does have something physical in her hand, so it seems more real to her than say, the car in the grocery store. Lately she has also been saying little spiders are crawling on her or on the floor and she keeps swiping them away or stepping on them. Again, it is harder for her to always know these are not real. She might be seeing some dirt on the floor, a piece of fuzz on her shirt, or hair that brushes on her neck, that all make her see and sometimes feel something crawling on her.

When Mom insists someone is putting strings in her food, we just tell her we don't see it and we try to explain it is just rice, or shredded cheese, etc... I can see she is getting a bit more insistent about it though. I think eventually we won't be able to explain it away for her anymore because her brain won't understand after a while. It's important to know that when people with dementia insist they see things or someone is doing something to them, they are not trying to be obstinate or annoy you. They really think what they are seeing is there. So try to understand where they are coming from, explain it if you can, divert their attention to something else, or change the situation. By change the situation I mean do things a bit differently. One day serving Mom food that is mixed together, like fried rice, or taco meat with cheese on it may be a bad idea. She may need all her food separated so she does not see "things" in her food.

Little quirks are common in people with dementia. It might surprise or scare us as caregivers, but it is actually normal. When we can understand what is going on, it is a bit easier for us to figure out how to deal with it and make things a bit easier for our loved one.

Blessings,

Rev. Katie

Zentangles: Meditative Art Practice for Dementia

Today in our TimeSlips session, we added in another art form to experiment with. We made some Zentangles, which is a meditative art practice that enables you to make abstract pictures using different patterns. Simply put, it is meditative doodling. You take a blank square, draw in some guidelines, and then fill the square with any patterns you dream up. Then you can shade the finished square in with plain pencil if you want, but today we colored them with colored pencil. I took everyone's finished Zentangle and mounted them on colored note cards so everyone got to take home a handmade card they can use in the future.

This was a really great art exercise as it was accessible to the people in different stages of dementia and their caregivers were able to create as well. I think it was a relaxing and fun process for all of us.

There are many different art forms to be used in helping people with dementia, the key is finding things that are easy and abstract.

Zentangles are a great meditative art practice no matter your artisitic ability. Try it out, you will really like it! Then you can use your Zentangles for handmade cards, tags for Christmas gifts, or take a bunch and frame them in a large frame.

Blessings,

Rev. Katie 

No Gravy

This was our first Thanksgiving without gravy.

My Mom makes the best gravy, and last year she was still able to remember how to make it. This year she really wanted to make the gravy and we assumed she still could. After a few minutes though it became evident that she couldn't and the gravy was burnt and had to be thrown out.

Our turkey with no gravy.

At first I saw this as sad, because Mom was sad that this was the first Thanksgiving without gravy. I felt bad she was unable to make this for us. I was sad at the progression of her disease from last year. But then I realized, who the heck cares if we don't have gravy?

We have each other and we have another Thanksgiving with Mom. I will take that over gravy any day.

The holidays tend to make it glaringly obvious how your loved one has changed since the last year, and that can be hard to handle. Instead of focusing on what has been lost, you have to remember all the things you still have and all the time you were able to have together over the year. There are still many blessings in life even if you don't have gravy.

Blessings,

Rev. Katie

Alzheimer's and the Soul

I read an interesting blog post from Psychiatrist, Dr. Farid Sabet called Soul Essence Shining Through the Alzheimer's Brain. He speaks of the soul always being part of us, even if our mind is deteriorating. He says, "you will notice sparks of a soul shining through a dysfunctional brain."

We too often forget about the spiritual side of ourselves, particularly when we are dealing with dementia. All too often people say they "lost" their parent to Alzheimer's, even before the person has died. We think that our loved one is no longer who we once knew. In reaction to that, we might not know how to interact with someone with dementia since they seem to be "gone" so sometimes we don't interact with them at all. But if we remember that their soul, the essence of who they are, still remains, we remember their humanity.

In my theological understanding, I do not believe in heaven and hell, but I do believe in the soul. The soul as being the essence of who we are that is an energy which remains in this Universe for all time. That is why so much of my ministry focuses on discovering your own soul, who you truly are, because that helps us be happier and more productive, caring members of society. The more grounded we are in ourselves, the more we can help the world.

I believe children are far closer to understanding their soul than adults because they have not been taught as much as we have to be a certain way or please certain people. It is possible with dementia that people again come closer to their soul because they are going back to their core being.

For instance, my Mom still wants to care for people and animals. The same things, like a laughing child, make her smile. I see the essence of her still here, even if her memory is not here. She values love, relationships, and caring for others. That is who she is, and that is always who she will be. If we can see that more often, we are better able to spend time with our loved ones. We can just sit and listen to them, or if they no longer talk, we can talk about the things we know touch their soul. It is up to us to remember to see their soul through the illness.

When Mom was in the early stages of dementia, I made her a little scrapbook to hang on her wall which has photos of her in her element, with boxes of homemade cookies and her grandkids eating the cookies. It says "What you do may change, but who you are will never change." I always wanted her to know that even if she can't make cookies one day (and now she can't), the essence of who she is will always be here, and we will always try hard to remember that. I wanted her to remember that too, so she knows even if her mind is gone, her heart and soul are still here.

Blessings,

Rev. Katie

Rules Don't Apply

When I was little I learned not to drink milk from my cereal bowl, I learned to eat neatly and not drop my food, I learned not to play with my food, and I learned that I had to eat what was put in front of me. I learned all the things most of us teach our children.

Honey banana rice with pork.

So the other day when my Mom mixed rice, bananas, and honey together at dinner, I was reminded of how many of those rules do not apply anymore. Mom just commented yesterday morning, after she had drunk the milk out of her cereal bowl, "Remember when I taught you not to drink milk from your bowl?" That memory made her smile. It was kind of funny for us to think of how she now does many of the things she taught us not to do. Her hands shake from the Parkinson's so she is sometimes a messy eater and drops her food. She does not always want to eat what is put in front of her so we make her something else.

What makes me really happy though is that none of us care about the rules. Who cares if she makes odd food pairings or has a messy spot at the table? She is still the beautiful person she has always been. She is still important and valued. It does not matter that the rules no longer apply.

It can be hard for us to watch these changes because these rules are often the ones that people believe split adults from children. They are a sign of ability and health. At first it made me sad to see Mom dropping her food, but that is really just my fear over the progression of her disease, not that it actually matters if she drops the food. As we see these changes, we need to remember that our loved on with dementia is still valued and important. The changes do not mean we are losing our loved one,  but that they are transitioning into a new phase in their life that we have the privilege to be with them for the journey.

Blessings,

Rev. Katie

"I Think I Lost My Mother"

It is quite an eye opening experience when you have to walk up to a stranger and say "I think I lost my mother, can you help me?"

http://www.flickr.com/photos/blackdutchdoublelibra/129954840/

Today Mom and I went to Jo Ann Fabrics, a large craft store. This is a store she knows well so when she said she was going to the restroom a few aisles away and she did not want me to come help her, I said ok. Clearly that was a bad idea.

Mom went to the restroom, I put something in my cart, and then I went right over to the bathroom to help her, only to find the bathroom empty. I then checked the men's bathroom and looked all around the aisles and could not find her. I started to panic. I had lost my mother.

I went to ask a sales associate who was helping another customer if she saw a woman in a long yellow coat with white hair. When she said no I told her and the customer, "I think I lost my mother, can you help me?" The sales associate was mid-aged, and just seemed to think I was weird. The customer was a little older, and immediatly said "Does your mother tend to wander off?" She understood right away that I was serious and Mom must have dementia. The customer was immediatly ready to help me search the store, when I saw Mom walk across the aisles so I ran over to get her.

For a slow lady with Parkinson's who needs a handicapped tag for the car, apparently she can be surprisingly fast at times. When I got to the aisle, I couldn't find her again!

A few aisles down I found Mom and all was well. She had gotten lost trying to find the bathroom. We finally got to the restroom and laughed hysterically at how I had lost her.

It is funny now, but in the moment it was really scary. I thought I might have to ask the store to go in lock-down like they do when a child goes missing. I had heard of this happening to people, and even Dad had mentioned that Mom has a tendency to wander off when he is getting something off the shelf in the grocery store. However, I figured it would not happen to me because I am faster than Mom and could keep an eye on her. I was so wrong!

When Mom first said she was going to the bathroom, I said I would go with her, but she said she didn't want me to. I really wanted to let her maintain some of her independence and since this is a store she knows, I figured I could let her get to the bathroom. I would then just follow a minute later so if she needed me I would be there.

It is hard for me to think of needing to care for Mom in the same way I need to care for my child. Actually, I no longer need to dress my son, but I do need to dress Mom. I have no idea where the line is between caring for her so much that I take away what independence she has left, and not caring for her enough so things like this happen.

Clearly I need to adjust my idea of how much independence Mom can have and care for her more like a young child. I hate admitting that because it can sound condescending or belittling, but I need to keep her safe.

This was another day of change and learning what phase of dementia we are now in.

Blessings,

Rev. Katie