In a blink of an eye

Five years ago, even though we had a few mystery symptoms that were going on with my husband (we blamed it on stress and depression) my life was pretty easy going, until that moment, that "blink of an eye moment".   We were visiting friends, having an ordinary life, my husband grabbed his head and slid down the wall.  After he started talking nonsense and walked, dragging his leg, we rushed him into the hospital.  Within the next few months he was given a diagnosis of dementia.


It has taken trial and error, grieving, soul searching, friends, family, professionals and God's strength to guide me along our journey.  I learned that God has prepared me for the tasks ahead.  My professional training,  I am a special education teacher who works with students with emotionally disturbed students, works well when applied at home.  My students have a difficult time communicating wants and needs and sometimes use aggression to get what they need. It took me a while to understand that what I was trained for at work could help me at home.


All has changed from that moment and continues to change as his Alzheimer's takes away his functioning piece by piece.  I love this man, whom I have shared my life.  This disease does not change that.  I want him to be able to live out his life in dignity.


We recently had another blink of an eye moment.  We almost lost him to an infection.  He had a kidney infection, pneumonia, and now congestive heart failure.  He fought hard to survive and our family and friends battled along with him.  They arranged for meals at the hospital for me, took care of our pets, mowed our yard, washed my clothes, prayed, and helped get the house ready for his return.   


I wasn't ready to let him go and I don't think he was ready yet either.  While in the ICU, I played his favorite music, brought sunflowers from his garden and declared his room a "no cry zone".  Everyone was only allowed to celebrate his life with joy and laughter.


This last "blink of an eye" moment has again changed everything and I am again learning to adjust.  We had found our new normal and were comfortable in that.   This moment in time has moved me closer to the realities that are coming. 


He has lost a lot of his abilities due to his infection.  He may get some of them back, that does happen with dementia.  Now things are different again.      


I am determined that when the time comes, that "blink of an eye moment", I will do it bravely, do it without tears and again fight for his dignity.  In a disease that takes all, we are determined to give our all.  

Oh the Unexpected!

I know that unexpected stuff is going to happen with Alzheimer's, but somehow I never expect it.   One evening, my husband was getting ready for bed and was fixing a dish of food for the dog.  He put the food into a glass bowl. 


I gave up a  long time ago having rules for things. Once upon a time the rule was; soup was eaten from bowls, silverware was put back into the silverware drawer, and dog food went into dog dishes.  Simple rules, actually.   Now days anything goes. 


In this house the Alzheimer's rule is foremost, stay safe.  So putting dog food in any dish in the cabinet works, as long as you don't get hurt.  So the unexpected - my husband fell, the dish crashed to the floor and his hand slammed down on top of a glass shard.


We have plastic dishes for the dog.  How do I get him to use the plastic?  I don't, unless I follow him around or hide all of the glass.  Of course this is probably a one time event.  Not the falling.  He has fallen before since he has been sick and I know he will fall again.


Can I keep him safe from everything?  How can I keep him safe?  I don't have the answers.  


He likes to help out.   Do I take every shred of independence from him?  I strive to keep him as involved as I can.  I want him to feel as productive as he can, for as long as he can.  His desire through all this has been to continue to take care of our family.


I still think some independence is okay.  I think it is my job to keep him safe, but I can't  always control the outcome.  The unexpected will happen.  I think the way I respond is the key.  


He fell.  There was a lot of blood and the cut seemed pretty deep.  I helped him up, wrapped his hand, helped him put his shoes on, and tried to help keep him calm. We had a quick trip to the ER.  He had stitches.  This wasn't a fun evening, but it seems to be a part of our new normal.  


Expect the unexpected!

Conflict - Alzheimer's Style

When my husband was first diagnosed with Alzheimer's Disease, I had a definition in my head, but the definition wasn't connected to the reality of what my day to day living would become.  


The first Christmas season after the diagnosis, we were going to drive 45 minutes to my brother's house for a family gathering.  I hadn't finished all of my shopping so we stopped at the store before we left town.  It had snowed the night before and the roads were sloppy.  We discovered on the way to the store that we were out of window washer, so we picked up a bottle.


When we got out to the parking lot, my husband opened the hood.  He took a few minutes staring at the engine.  Then he started to open the only lid that I am familiar with, the one for the oil.  I really don't know where the washer fluid should go, but I do know where it should not.  I tried to talk him into waiting, but he refused, so, not knowing what to do, I slammed the hood shut.


He started to shake, pointed his finger in my face, and screamed at me, then walked off through the parking lot.  Not knowing what to do, I followed him down the street.  Since the sidewalk was covered with snow, he walked in the street.  I felt that his safety was in danger and so I phoned the police. 


I gave them an overview of what happened and told them where we were.  Then the 911 operator wanted a description of my husband.  Of course in that moment of craziness, I said, he is the only man walking in the middle of the street in front of Dillon's with a women trailing behind him.  Of course she was looking for the 6 ft. and so on details.  After giving those, they came out to talk to him.  He was very angry at me as well as at the policeman.  They finally talked him into going with me.  He held onto this resentment for nearly a year.  He could hardly remember what he had done in a day, but he could remember being angry at me about the window wash.


I was very puzzled for a long time about what had happened.  I had some anger too about what happened, until I learned more about this disease.  At no point did I think I played a part in what had happened.


The angry outburst had a name: a catastrophic episode.  This is an extreme response to too much stimuli.  I could have prevented it.  Who knew?  I am a special education teacher who works with emotionally disturbed children.  I  am not a stranger to emotional meltdowns.  If I had been working with a student, I would have given space, slowed my motions, tried to redirect and de-escalate.  I would not have pushed the student into a reaction, as I did my husband.  Also, I would not have waited to shop at the last minute to add more stress.  At work, I would have been reactive and I would have had a plan.  


It took me a while to figure out that the de-escalation tools that work at school can work at home.  My husbands reactions are from his disease and he does not have control over them.   I am grateful I have these tools and am now using them at home.


Do the tools always work?  Oh no, of course not.  When I over extend myself in other areas of my life, the stress shows in my face and actions and due to the disease he misreads me.  But since I know that I am the one that can prevent most of the problems before hand and I am the one that can redirect when something does happen, we have less  catastrophic episodes.  Less stress and chaos in our life leaves room for enjoyable moments of being together.

Holidays and Alzheimer's Disease

My husband has had a diagnosis of Alzheimer's Disease for the last 5 years.  We have had lots of experience with family gatherings and care-giving during that time.  I have learned that it takes a lot of  planning to help keep him comfortable.  Every situation is different of course, but for my husband, he does better with structure and a schedule that is predictable.


My family certainly does not qualify for structured and predictable, but after some wild learning experiences, I have learned a few things.  Of course, the disease is in continuous flux, so nothing is set in stone.  Flexibility is key.  He does better when we are at our house because of the familiarity.  Traveling or going to someone else's house takes another plan.  Since he can't remember the details, but he does seem to recall some of the plans, he will need to reminded over and over.  I try to start our conversations with the information he seems to be struggling with, such as, who will be coming, when they are coming, etc.


The noise and commotion along with the disruption of his schedule are our main problems.  I keep his morning schedule as uninterrupted as I can. No matter what, my husband has to start his day the same way every day.  I think of it as a computer rebooting.  He gets his coffee, get dressed, washes or puts dishes away, and then makes the bed.  He will eat his breakfast when someone gives it to him and then takes his medicine.   He does a lot of walking around between tasks.  This usually takes a while, but some days can take longer, so that has to be a part of his schedule.  If he is interrupted, he can have a meltdown or a catastrophic episode.

Since it is Easter, I will make sure our clothes are ready the day before and have as much of the dinner made ahead.  I also have other family members bring parts of the dinner.  Simplicity is my theme song and organization is my friend.  The most important thing I can do is to stay calm and in control.  I get up a lot earlier than my husband normally, so I try to do a lot of the preparation ahead of time.  We have in-home health care while I am at work, so I try to run my errands ahead of time while he is with the care-giver.


I keep our bedroom ready for him so he can go in and shut the door if he needs to get away.  Other family members can step in with dinner preparation if I need to go sit with him.


Many of the family live a distance away, so there is lots of visiting and catching up.  We have an egg hunt with prizes for all.  We try to keep things fun for all, from the little ones to the eldest.  If things don't work out perfectly, we don't make a big deal of out of it, we just try to make him comfortable and move on.  That is the flexibility.

The Why

I am very familiar with frugal living.  In the 80’s, I found a cookbook in the bookstore that changed my life and my attitude about using God’ resources.  The book was, More with Less.  I learned to cook without boxes and cans, and eat less animal protein .  


About 8 years ago, we were living far away from family and friends.   We began to notice something happening to my husband.  We took him to doctors, but couldn’t figure out what was wrong with him.  We had a young child, so I knew I couldn’t do this alone.  I knew I had to get home.   We moved back closer to family.  My husband couldn’t stay employed and continued to get worse, until he was diagnosed at age 58 with Alzheimer’s disease.   We had 1 job,  a child at home and medication that was hundreds of dollars a month with insurance paying only half.   
I  researched about living a frugal life.  I read over and over the articles about cutting down and living with-out.  These were things I knew how to do and most of them I was already doing.   I  made a budget, tracked my spending, and knew grocery costs.  I knew that making a menu each week is vital to saving money.   I bake my own bread, use less processed food,  eat at home, eat leftovers and pack a lunch for work.  We grow our own vegetables.  I don’t have a lot of yard space, but we use almost every available spot to grow produce.  I spend less money than I make.  I worked hard to  get rid of debt.  I learned to make laundry soap and cleaning solutions made with vinegar. Our menus had us eating a lot more beans and rice.  We don't use paper towels or paper napkins.  We hang our laundry outside if possible and inside if not.   We buy used when possible and not at all if we don't have money set aside. Our heat is set at 65 degreess during the day and lower at night.   We have a small heater for the bedroom if it gets too cold.   I use coupons when possible.  Being frugal and doing without helped to eliminate the credit card debt and pay the monthly bills.


 My husband went from staying alone to needing full time care.  We have people that come in when I am at work, but I am his care person on the weekends, evenings, and overnight.  I am finding that the better organized and clutter-free my house is, the easier it is to manage with different folk coming in and out.      
 I am now paying off my debt ahead of time and plan on putting that money on each of my remaining payments.  I have also put aside an emergency fund.  My fund came in pretty handy last fall when a truck pulled into my lane and slammed into us.  I had to pay the deductable to get the car fixed.  My husband's door was not useable and it made my him very upset each time he saw it.  When they collected from the other party, I was able put their check back into the bank.

I budget every penny and make the frugal choices for my family.  I am not advocating that the things that work for my family will work for yours.  I am sharing what I have learned about living with less money and also living with Alzheimer's.  I am continuously learning how to make the smart decisions.  At the same time, I am trying to live as fully as I can with my husband, even though I loose him bit by bit.  For me living a frugal life style means being able to make choices and to live as stress free from debt as I possibly can.