Sorry and Grateful

Sometimes I feel sorry for myself. 

I feel sorry for myself when:

I watch couples sharing in stimulating conversation.

I see twosomes off on an exciting adventure.

I very seldom have time alone.

I have to spend time searching for hidden things.

I have to get up in the middle of the night.

I think this is normal - feeling sorry. Sometimes it is difficult not to dwell on the negative aspects of having a loved one suffering with Alzheimer’s Disease. 

But what an extremely ungrateful person I would be if I thought about these negative feelings more than sometimes.  I still have so much to be thankful for.

I’m thankful:

Bob still asks me if I will marry him.

We have loving and caring family and friends who are always thinking, praying for and serving us.

Our past travels have taken us to magical places.

In days gone by, we have worked, played, laughed, cried, shared thoughts and feelings.

We can still hike, enjoy walks, hold hands, go to church, movies, plays, symphonies, family gatherings.  This won’t last forever, but when it ends, my memories will still be there.

He can walk, talk, pray, shave, feed himself, and shower.  When he no longer can, I hope I will still be thankful.

He still knows who I am.  When he can’t remember, I’ll still be thankful.  I’ll be thankful because I know he loves me, and he loves his family.  He has told us many times, verbally and in writing.    We will always love him.  No matter what this disease puts us through.

Burglars

“You haven’t blogged for awhile,” my sister said a couple of days ago.

“I know,” I replied.

  It is difficult for me to walk the fine line of showing respect and loyalty to the man I love so dearly, and sharing helpful information with others of what it is like living with a person with Alzheimer’s.

A few months ago I mentioned I would write about communication.   Here are a few thoughts, with others to be added in the future:

A typical behavior (confirmed by my support group) of one suffering with Alzheimer’s Disease is that they constantly feel like burglars are coming in and stealing their stuff.  Every day you could explain to them that they are forgetting where they put things, and that’s why they can’t find them.  Wrong choice!  This explanation makes no sense to them.  It even makes them angry that you would even consider this as a possibility. 

  

Instead, you jump, with two feet, into their world and to their way of thinking.   I first ask what is missing.  Sometimes my husband can tell me; sometimes he can’t.  When he can’t, I start naming the treasures he carries around in his pockets.  When we figure out the missing objects, I start looking for them.  It would be useless to ask  where he had them last or when he last saw them.  He can’t remember.    After we discover what is missing, I madly go through the house looking for them.

On a good day, it takes a minute or two because I’ve found them there before.  On an occastional bad day, it may take over an hour because they’re in a new hiding place.   So frustrating, but not his fault.    It’s the brain thief.  My husband is always happy when I find his things.   But the next day, we start all over.  The “goof balls” have come in and taken his stuff again.

On bad days, and even good days, we reward ourselves with healthy Banana- Chocolate Ice Cream.  Our son-in-law, a connoisseur of fine ice cream, doesn’t think it is proper calling this ice cream!  But we like it, and it satisfies our craving for sweets.

Banana Chocolate Ice Cream

(2 servings)

2 frozen bananas (Cut them in half before freezing)

2 heaping Tablespoons cocoa powder

½ cup vanilla almond milk

Place in blender until smooth and creamy.  (A heavy duty blender with a strong motor is best.)  You may need to stop the blender and stir things around a few times.

We always top it with a few sliced almonds, and chopped pecans or cashews.

Remember Who You Were

Remember Who You Were

“Remember who you are!”  I heard this hundreds of times throughout my adolescence as I left home for a date or hanging out with friends.  It was one of my dad’s favorite sayings.  He had such hope for keeping me always on the right track.

Today, I’d like to change it to: Remember who you (they) were.  I realized last week how important this is.

We moved to our condo almost a year and a half ago.  My husband and I felt a need to live closer to our daughter and some of my sisters.

Last week I finally got around to hanging some pictures.  I’m not sure if it was because I didn’t want to put nails in the beautifully painted walls, I felt insecure hanging pictures because my husband used to do it, I didn’t know which pictures I should hang, or if I am just plain lazy. 

I decided the study would be my first room to tackle.   A thought came thundering into my head as I contemplated which of our many pictures should be displayed in this room.  Why not have it a room dedicated to my husband?

 

I selected a few of the many plaques that have been piled on his desk for over a year to hang first.  My husband worked as an engineer for the federal government for thirty years.  The government loves plaques.  I also hung a framed flag that hung over the U.S. capitol on his birthday in 1997, given to him on the day of his retirement.

Also on the wall are an Al Rounds painting of the Salt Lake Temple where we were married, three paintings by our sons, as well as two Robert Duncan paintings which my husband picked out several years ago because they reminded him of his grandpa’s farm.  

On his desk I placed an illustration of my husband that our son drew for him on his 70^th birthday.  Circling his head are many of his favorite expressions.

It was an extremely therapeutic day for me as well as for my husband.  The plaques reminded me of how bright my husband was and how much he enjoyed his engineering career.   I need to remember that he once knew how to do complicated mathematical calculations, when now he sometimes has difficulty figuring out how to fix himself a bowl of cold cereal.  

My husband was surprised when I showed him the plaques illustrating some of his accomplishments.  As we looked at the painting of the temple, he was happy to hear we were married there forty-seven years ago.  Sometimes he forgets we are married.  He has proposed to me many times in the past year.    He loved seeing the pictures of his “grandpa’s" farm and the work of his artist sons.

Remember who you were.    Remember who they were.


I'd love you to comment on what you've done or what you are doing now to remember or help your loved one remember.

Thankful

Thankful...

I am grateful for family and friends who:

·      take my husband out to eat when I have other appointments.

·      call  or text asking how I am doing and then lovingly listen.

·      call and talk to my husband, not asking questions because they are too difficult to answer, but reminiscing old times.

·      do puzzles with him and kindly ignore when wrong pieces are put together.

·      bring dinner and visit with us.

·      come to family dinners and activities for socializing.

·      go to plays, ballet and concerts with us.

·      take my husband for a Slurpee or ice cream cone and help him buy flowers for me with a love note attached.

·      treat him with love and respect and don’t correct him when he says things that aren’t quite right.

·      think of us or pray for us.

I’m thankful for the many lovely years we’ve spent together.  I’m thankful for the many hours we spend together now walking or hiking, grocery shopping, cleaning the house, doing dishes, folding laundry, and watching TV, hand in hand.

I’m thankful that my husband is loving, gentle, appreciative, and kind to me.  I hope and pray this will continue because I know it doesn’t for everyone with Alzheimer’s.

The disease is progressing.  Life is getting a little more difficult.  But I know I can do hard things.  I know God is watching over and blessing us.

Watching the Lights Go Out and Homemade Chili

 Watching the Lights Go Out and Homemade Quinoa Chili

Today I’d like to recommend a blog and a book.

The blog is Watching the Lights Go Out and can be found at www.davidhilfiker.blogspot.com

David Hilfiker, a medical doctor, was diagnosed with Alzheimer’s disease in September 2012. He publishes new posts about every three days, writing and reflecting on his day-to-day life with this disease. Surprisingly, he says it is one of the happiest periods of his life.  I just recently found out about the blog and am appreciating his posts, as well as reader comments.

The book is Losing My Mind  by Thomas DeBaggio. 

Thomas was diagnosed with early onset Alzheimer’s Disease in 2002 at the age of 57. He wrote about his experiences for as long as he was able, passing away in 2011.  I read this book several years ago, and found his documentation of his illness interesting, unsettling and sometimes a bit frightening for what lies ahead of us.

Now for some Caregiver Comfort:

Quinoa Chili

½ onion, diced

1 bell pepper, chopped

1  15-ounce can kidney beans, drained and rinsed

1  15-ounce can pinto beans, drained and rinsed

1  15-ounce can black beans, drained and rinsed

1  14-ounce can diced tomatoes

1  4-ounce can mild green chilies

3  cups water

1  Tablespoon Better Than Bouillon Vegetable Base

2  teaspoons garlic powder

2  teaspoons cumin

2  teaspoons chili powder

1  cup cooked quinoa

Spray large non-stick pan with Pam.  Saute onion and green pepper until onion is translucent.  Add remaining ingredients and heat until chili is hot.  Instead of the water and vegetable base, you can use chicken broth. 

or

Combine all ingredients in a crockpot.  Use ¾ cup uncooked quinoa which has been rinsed thoroughly.  Cook on high for 3-4 hours or low for 6-8 hours.  Stir in salt, but not too much, if you want to keep it healthy.  I don’t add any salt.

After chili is in bowls, you may garnish with guacamole, shredded cheese, crushed tortilla chips, and sour cream when serving. 

My husband and I ate it with a large lettuce and fruit salad.

Next time:  Talking to a person with Alzheimer's.

Preventing Alzheimer's

Preventing Alzheimer’s

The ideal time to prevent or delay Alzheimer’s is not when you begin manifesting symptoms of the disease.  The ideal time is today by:

1.  Healthy Eating

Healthy eating means dining mainly on the following foods, listed in the order of importance and amount:

 Leafy green vegetables and other vegetables

Fruits

Beans and legumes

Seeds and Nuts

Whole Grains

(I have been reading Eat to Live by Joel Fuhrman, M.D.  I’ve been eating the nutrient-rich diet he recommends.  I feel full and energetic all day and have lost 9 pounds in 1½ months.)

2.  Physical Exercise

Participate in aerobic exercise at least 30 minutes daily. 

My husband and I walk or hike.  Other exercise could include swimming, tennis, biking, basketball, running, skating, dancing…

3.  Adequate Sleep

Sleep at least seven or eight hours a night. 

My husband has often said that sleep deprivation was the cause of his memory and cognitive problems (Alzheimer’s Disease). He has commented repeatedly that he wants to make sure his children get the proper amount of sleep.

4.  Mental Exercise

Daily mental exercise could include sudoku, crossword puzzles, reading, card games, educational courses, writing, word games, math…

5.  Manage Stress

Keep life in balance.  Learn to say no when life is too busy.  Pursue relaxing activities such as yoga, socializing and crafting.

Sources:

University of Utah Neurology Clinic

The Anti-Alzheimer’s Prescription by Vincent Fortanasce, M.D.

Preventing Alzheimer’s by William Rodman Shankle, M.S., M.D. and Daniel G. Amen, M.D.

The Alzheimer’s Answer by Marwan Sabbagh, M.D.

Fear: Am I Going to Get It?

 Am I going to get it?

I think just about everybody worries they are getting Alzheimer’s disease or they will get it.   When a parent is first diagnosed with Alzheimer’s, children and siblings especially panic.  Is it in the genes?  Am I destined to get it?    Interesting enough, my husband has an identical twin brother with no sign of the disease.

When we can’t find our keys, we think we have it.  When we can’t remember someone’s name, we’re sure we are in the beginning stages.    We all have moments of forgetfulness.  Alzheimer’s is beyond “senior moments.”

Six years ago, things didn’t seem quite right with my husband.  He was  manifesting behaviors that just weren’t typical of him.  One day when I was leaving to go somewhere, he asked several times what time I would return.  In the past, he never asked a question twice.  Unlike me, he got it the first time.

A few weeks later, we were spending time with my siblings and their spouses at my sister’s cabin.  My sister and her husband were teaching us how to play a new card game, Hand and Foot.  My husband wasn’t catching on to the game at all.   Oh my goodness, I thought. I’m even catching on to this game.  Why on earth isn’t he getting it?  He’s one of the smartest people I know.  He always catches on to things.

On another occasion my husband was fixing omelets for dinner.  Omelets were his specialty.  He cracked eggs into the blender, then proceeded to add the green peppers and ham to be blended.  Needless to say, they were very interesting omelets.

With the encouragement of my husband’s siblings, we made an appointment with a neurologist.  Among other exercises, the neurologist asked him to draw a clock.  My husband, a civil engineer, drew a nice round circle.  Then, he placed the clock numbers outside of the circle.  They were not evenly spaced at all, which ordinarily would have driven him crazy. 

When the doctor asked him to draw hands to signify 11:10 on the clock, he was unable to do it.  The inability to draw a clock and place the hands in the correct places is typical of people who are struggling with Alzheimer’s Disease.

When the love of my life was diagnosed with this terrible disease, I was heartbroken. 

I'm sad for everyone who has it.  I'm sad for anyone who is going to get it.  I wonder if I will.  You wonder if you will.   But life is too beautiful and short to waste time worrying about whether we will or won’t.  Knowledge is different than worry.  It's power.

For more information on the signs of Alzheimer’s go to www.alz.org  At the top of the page, click Alzheimer’s and Dementia.  Then click on Know the 10 Signs.

Good News:

The good news is that many doctors believe there are four basic things we can do throughout our lives to either delay or prevent Alzheimer’s.   My husband’s neurologist at the University of Utah agrees.   We will talk about these in my next blogpost.  I will also suggest books you can read on the subject.

See you then!