Sometimes when you allow your heart to be filled with small things it can overflow the same as something huge and mind blowing. 

We often go to the negative first and then realize the positive later. I don’t want to be naive and lose sight of being vigilant. I do choose the positive, but sometimes I fall short.

In the last 6 months my husband’s day to day memory has not been great.  Simple daily tasks are forgotten totally or cause confusion.

So we spoke with the neurologist, we reviewed what memory issues were happening.  He made a comment that while not shocking still chilled me. He said “we need to protect the memory”

The type of person I am always researching I know about different types of memory lost and dementia that can start because of the type of stroke my husband suffered.  So a new memory drug was started, it is common and people take it easily with low adverse impact.  It takes a month to get to the full dose.

I didn’t know what to expect, I stay positive but low key and just wait.  It was the beginning of the 4^th week as I wrote this blog.

We were talking about Cinco de Mayo, and I remembered how my husband in a job 15+ years ago would go to his boss and make up some funny story to and ask for Cinco de Mayo off.  It would always be totally unbelievable and extremely funny.  As I was reminiscing, I said I cannot think of the name of his boss. Suddenly my husband blurted out the full name.  I was stunned, amazed, happy.  He had a big smile on his face because he realized he remembered it correctly.

My heart was filled with joy!

It does not end there; the very next day my husband was trying to get my attention he said my first name not once but twice.  I have not heard my name by his voice in almost 6 years. I cannot use anything as flat as a printed word to describe the joy, the tears, the excitement of hearing my love say my name.

My heart is full!

I found both my faith being strengthen and challenged since the stroke.  When it happened and I had God’s assurance that my husband would live.  Finding I could lean into my faith for all the decisions and harshness of watching someone you love almost die.

Now we face another health challenge, surgery, biopsy.  I am overwhelmed at times with fear, often it is irrational fear. The thought of my love having to endure anesthesia, pain, and trauma to his body.  My mind races back to the last surgery where he bled, had to go right back into surgery, iron, blood transfusion, and his kidneys crashed.

But God was ever present.

We have talked he is a little worried but assures me of how good a shape he is in, which is very true.  He tells me I am strong and he is strong.

I cried at his tests, and he reassured me.

Now I need to concentrate on what needs to be done and planned.  I want to deep clean the house.  I have a list of questions for the pre-surgery appointment.  I will advise them that I will be staying with him. Then I need to pack what will be needed in the hospital.  I have done it before, I just really hoped I would not be doing it again.

Preparing some food to help my Special needs son who wants to stay by himself for the first time in his life.  My heart says no, but my brain says that it will be great for him.  He will not be totally on his own.  We have a fantastic circle of people in our lives. 

I also must think about if things do not go great and we have to stay in the hospital longer.  Making sure I communicate when needed to his family and our children, and friends. I will plan on working after a few days off.  I have worked from a hospital more than I ever thought was possible in one lifetime.

One of the fantastic things in my life is my job, the benefits and my bosses and teammates.  Really blessed in the arena of employment.

Now it is just time for me and the Lord to get thru this, God knows the outcome.  As I made the bed this morning, I thanked God for taking the irrational fear from my mind.

I am going on more walks with my husband and dragging him down to see more sunrises with me.

I am thankful to be working at home so I can enjoy all the moments of everyday life.

We went to my husband’s 6-month kidney doctor appointment, there is always a slight twinge of anxiousness waiting as they review all the intensive blood and urine test results.  We had been traveling along at a good pace, everything was working excellently.

The focus is to keep the protein down, as the kidney’s thin with chronic kidney disease their filter does not work well.  I work very hard to give him plenty of protein and not too much but to sustain him thru his heavy workouts.

I try to jump ahead and get the protein count, but they do not jump ahead and steadily they go thru each aspect of the tests and his kidney functions.

All was good but the protein it doubled.

It was in an instance, I was crushed, guilty, tears trying to well up, but I fought them back. Instantly remembering his dialysis treatments in the hospital, the waiting every morning for the kidney doctor.

I looked at my husband he looked at me not understanding what was happening, me either.

Then the questions started pouring out, how long does the protein stay in the urine, what other things cause protein in the body, flash back over and full caregiver mode engaged.

The PA who was very calm said at this point there is no cause for worry we will test again in a month.

Still on the way home there was a twinge of panic, moisture in my eyes.

My husband looked at me and said Thank you.

For what I asked, he said for knowing the questions to ask.  Then he made this gesture his hands hovering over his head.  He does this when he is explaining that he cannot understand something, or something is confusing.

I smiled at him pulled my self together, finished the drive home and made the appointment for a month out.

There are many physical components to a stroke.  There are also emotional ones.

Sometimes a person gets very aggressive, or they cannot sleep well.  Early dementia can set in. 

Thankfully that has not happened in our case.

The emotionally hugging, light touch of a loved one, holding hands and other physical comforts has changed.

I look at our son with special needs, who is desperately missing the father that he hung out and worked with every day.

The dad that wrapped his arms around him and reassured him he was wonderful, and everything was good, and he was safe.  That dad was destroyed by the stroke.  He doesn’t really know how to hug. 

Holding hands is difficult because it throws him off balance when walking, and he really doesn’t like the touch anymore.  It bothers the stroke brain.

Having to talk to our son and tell him if you go to hug your dad and he pushes you away.  You must walk away, and you CANNOT let your feelings get hurt.  My son with the heart of an 8-year-old must understand this is how you protect yourself.

When the hug is accepted it is brief but enjoy it and remember it to carry with you for the time when it isn’t accepted.

Explaining to your husband whose had catastrophic brain damage that when he pushes his son away it hurts his feelings.  That he hugs him out of love and that the return hug makes him feel loved and safe.

Then I wonder what they both are thinking as they walk away.

How the roles have been reversed some what as the son knows more about how to do normal everyday things than the father.

The son understands but must be reminded that his dad is still there but different.

Can I just say I hate this over used term.  I hope I never, ever say it to anyone who Is in a similar or worst situation than taking care of a stroke survivor.

The reason I hate it is because it really is such a shallow description of the total disruption and destruction of a life, and lives.

It is not NEW NORMAL, that my extremely intelligent husband with a quick mind and awesome math skills.  Now cannot tie his own shoe.

New Normal-certain places and restaurants we can no longer visit because they are too busy or loud.

New normal no more traveling, no future traveling.  It is limited to seeing grandkids in Mississippi. Although I am going to plan a trip back to Indiana which I hope turns out all right.

New normal, no more birthday cards, Mother’s Day cards, anniversary cards from my husband because he has no concept of these days, nor can he remember them.

New Normal my husband can no longer speak fluently.

I mean I could just keep going, but no more new normal.  It really is a ridiculous statement.  I do not mean to offend anyone who has used this phrase.  I have learned much in my decision to be a mother to a special needs child and now caregiver to the love of my life.

My new normal is filled with joy.  I try to count it all joy and for the most part I am very successful.

I also wonder at times why this must be the new normal.

So many things changed when my husband had his stroke.  So many tears from all of us over the past 5 years.

Mourning the future we planned, finding the joy in the future we have!

When I think about how he made great decisions and kept me from flying off the handle (at least sometimes) Now he does not know how to put his glasses in their holder and turn off the bedside lamp.

Then he could fix anything.  Now broken things confuse him.  I have a handyman on speed dial.

Then we talked far into the night, about our days, our frustrations, and always ended with a laugh.  Now he struggles to speak, and I struggle to understand.  But we still end the night in laughter.

Then we made all our major decisions together now I make all the decisions.

Then we took turns driving, now I do all the driving.  It was a big hurdle because for years after the stroke he wanted to drive, and it was very painful concluding that he could not drive safely.

Some things are the same we laughed then, and we laugh now.

Then sometimes we went in opposite directions, now we always go together.

To be honest we did not plan enough on certain aspects of our future.  Now we have planned everything including our burial.

Then there was a lot of noise, now things are much quieter.

Then there were plans for traveling nothing extravagant, now we stay at home.

Then we loved, now we loved.  We depended on each and we still depend on each other. 

1962 days have passed since my husband had a devastating stroke that changed every aspect of our lives. I have shaved his face 1911 times, I have gotten up 1961 days and thanked God for every one of them. I have hoped 1865 times that I have the strength to do all that needs to be done.

1962, days ago, as I stepped into the emergency room, God assured me that my husband would live. 1962 days ago God showed me how much he loved me by saving the man that was made for me and my anchor.

1958 days ago my son with special needs learned how to uber so he could see his dad when someone could not drive him. He came everyday, he talked to him, he laid hands on him, he prayed for him, he loved and loves him to the core.

Daily I called my brother in law. To review what happened during the day and what decisions I had to make. Every call he encouraged me and told me I was doing the right thing and made the right decisions.

I talked daily to his daughter who could not just listen to the reports and brought the kids so she could just look at him. His daughter cried, the grand kids cried, but they were also reassured that he was still here and moving in the right direction.

I do not know the number of days I wondered if something more had happened because he forgot how to put toothpaste on his toothbrush or no longer remembers how to put ice in his cup.

What I know is he does not forget how to exercise, lift weights. He does not get lost going for a walk in our neighborhood.

He has forgotten our history, our marriage but he loves me today and everyday.

Yes the stroke was devastating and robbed us of much, it gave us a different future one we had not planned.

I am looking forward to the next 1962 days.

It seems that there are so many things to count.  I do not recall counting as much prior to my husband having his stroke.  Now counting is not tedious or boring and sometimes I do not even realize I am doing it and other times it is very important as least in my mind.

I do remember sitting in the corner of the ICU room counting the number of times the machine went up and down that was breathing for my husband.  The Swoosh sound it made when it was doing its magical thing.  Of course, there was the number of beeps for each bag of medicine they emptied and signaled the nurse to come and change it. 

The sound of the bed as the air changed to help keep him from getting bed sores.  The sound of the blood pressure machine as it pumped up and released.  The number of days sleeping in the room with him.  The number of showers not taken (by me).  The number of hours I stood in the corner of the room working where I could watch all the machines.

So many trips down the hall to the Heart Cath waiting room where I found a coffee machine that was on 24/7.

Moving on it was the number of days before he awakened the first time (12), the number of days in ICU (29) the number of days before I heard his voice again…56.  There were so many more he went 40 days without a shower.

In rehab it was the number of steps he could take, how many sounds could he make during speech therapy, how many times he would pull his trachea tube out, how many times he fell out of bed.  The number of times I played the same Bob Dylan song for him, filling out his menu selections daily for 14 days. 

The number of prayers and times thanking god countless.

Right now, I am on day 38 of him forgetting what the eye glass holder next to his bed is for, every night I watch him pick it up, study stick his fingers in the opening.  I know eventually he will ask me what it is for and I try and say the exact same thing because this is what will help him make the connection.  He often asks why it is empty.  I explain.  One day he will remember, and I will count something else.

Some of the other numbers, are 1520 times I have shaved his face, 36, specialist’s appointments.

The most important thing is 1360 days since the stroke waking up next to him.

I have not written a blog entry in 11 months.  I was unsure if I should keep going or not.  It does not have to do with a small following or popularity it had to do with do I have anything more to say.  Here I am so I guess I do.

I realized recently that as we are coming up on 4 years since the day my husband had a stroke, I am just now understanding, making decisions and coming to grip with some of the impacts of the stroke.

I disabled my VBRO (Vacation Bedroom Rentals) account because I know I am not taking those trips.  We are not going to those Georgia Mountains.  We are not going to Yellowstone or any of the other places.  The facts are those type of trips will be too hard on my husband.  The confusion, the discomfort, the anxiety he feels or experiences when out of the normal routine and familiar surroundings are not worth it.  How can they be enjoyed at his expense? It only took me almost 4 years.  I stopped because it was self-inflicted pain.

Thank goodness we can travel to Mississippi to see the grandkids because that is familiar and simple.

I tried joining an online Aphasia support group, but do not have much time to participate. 

I have felt jealously at what I thought were normal lives being lived around me. 

The continued “Hard” conversations are emotionally draining and sometimes I wonder can I keep up with his needs.   The latest of one was one we have had before where he correlates his physical fitness with the ability to speak, remember things and understand the world around him. So, I had to remind him your brain was actually damaged, the part that holds your language and now you have to find your words from another part of your brain.  He cries, how can you love someone like me?  He asks.  How can I not love someone who suffered a terrible blow in the prime of their retirement?  Who has never stopped working on getting better?  I remind him of all the things he can do and where he came from, brain bleeding for 48 hours, complete paralysis on his right side.  Doctors asking me to sign a DNR.

The road is long and always will be for him.  He tells me I don’t want to live if I cannot do things for myself and in the same breath says I will not stop fighting.  All of those words came out clearly.

I have to think if he can do it then so can I.  I can keep putting the socks on, shaving the face.  I can stop getting scared when he suddenly forgets how to comb his hair or how to swallow his medicine. I can figure out different ways to describe things until he understands.  I won’t leave his side until I figure out what he wants to watch on TV.  I can continue to unwrap his protein bars.

I can take joy in his life, because he does take joy and pride in what he does.  Just because there is a component of the emotional rollercoaster that goes along with stroke and brain damage doesn’t mean he dwells on it and neither will I.

I may still cry on certain days and mourn what our life should have been at this stage, and I think that is ok too. 

The joy is provided by his life continuing, just like the Lord promised me when I entered that ER on Oct 27, 2017.

Life is full of sounds and smells. Sounds stick with you often, while smells can bring up memories at least for me.

The first sounds of the stroke was the gobbly-gook sounds coming from my husband over speaker mode of my son’s phone.

Hospitals are full of sounds and smells. The beep beep when the IV it was time to change it, the SHUSH-CUSH sound of the ventilator. The soft shhhh sound of the bed changing to help prevent bed sores. The gurgling sound coming from Scott alerting that suction was needed. The soft quick steps of the nurses and others up and down the hall. Crying, hush talking, creaking of wheels as the carts are moved back and forth.

Trying to sleep at home after 14 days was impossible, it was so dark and quiet usually this is perfect for sleeping but I kept waiting to hear the beeping, gurgling and a million other noises.

Just like life the sounds change sometimes dramatically depending on where you go, live and work.

Fast forward to being home. Wheelchair noise a squeaking rubber sound on the floor, transition to the tennis ball sound of the walker scraping across the floors.

The quiet because my husband could not speak well and the tone of his voice has changed, because of the ventilator and trachea tube.

The thud was probably the worse sound because that was the sound of him hitting the floor. It happened fairly often and then no more. He always smiled when he fell like it was some secret joke.

The sounds of life now are that soft scuffing sound when he walks, the right leg doesn’t move normally there is still some paralysis it is a wonderful sound. There are many more, I listen in the morning and evening for the sound of the toothbrush…I think I have said close to 1,500 times “Honey turn it on” then next sound when he is done is the kind of ricocheting sound as the toothbrush lays in the sink still running…..another 1500 times saying “Honey turn it off”

Listening to breathing at night, placing my hand lightly on his chest to feel it moving up and down in rhythm to his snoring.

Laying in bed in the morning listening for the pantry door to be opened as he retrieves cat food for the morning feeding of our cat. Getting those couple extra minutes before I am up to go shave his face and help him in the shower.

Handing him something for the trash and then hearing the back door slam, sprinting after him to see where he is putting it! Sometimes the back of the car, the golf cart. It is ok I just remind him where the trash can is and how to open it.

Standing next to him in church as he sings the worship songs, listening to his prayers where most I cannot understand but God can!

His laughter, is different not as vibrant or loud, but now it is raspy and shallow. His words are mixed up but he sings to me and reads out loud. It is soothing.

The sound of his work outs on the other side of the wall from my office area. The thunk of the dumbbells, the heavy breathing during his pushups. The squeaking of the weight bench.

These are some of the sounds of our life and I am glad for it.