And so it began...

So, a new life has begun for us.  My husband's illness has been progressing for well over five years. It began with subtle symptoms, puzzling changes that could be explained by age, long hours fishing at the pier, my husband's long term and severe depression and a myriad of other reasons we all come up with when normal begins to slide slightly off kilter. His legs were tired. They did not hold him up for an entire day of fishing. He seemed a bit more forgetful as he made decisions at times that did not make sense when compared to his past decisions.
I will attest right up front that I was full of anger and resentments towards this husband of mine. I did not respond to his initial observations about his body or the touch of fear I heard in his voice at times. This was a man whose choices often brought extreme chaos into our lives. So I listened with half a heart and suggested that he rest more rather than fishing or looking for bait for hours and hours at a time. I don't blame myself. The only reason I was still around was that the God of my understanding...Jesus...was clear with me on what He wanted me to do and that was, one hundred percent of the time, "love him (my husband)" and so I stayed in the marriage. It is tempting to paint myself as a long suffering wife and take a deep, meaningful sigh as I speak of staying in the marriage. I won't dwell on it but my issues and broken places warped me into a woman who could not be married in any reasonable way so I have come to understand that my husband and I had far more in common than I dreamed at the time.
My relationship with Christ was growing, slowly and with a great deal of resistance on my part. It seemed love was the single most important part of that relationship and my marriage was God's plan for my life until death parted us. This pissed me off. I was struggling with my sense of loss, the pain of unfulfilled expectations and a strong case of entitlement to a "fair" hearing from this God of mine. But when I prayed and asked what I should do about this painful marriage I always heard the same two words, "love him". Looking back I can see how I was being changed into the woman I am today. God was doing a work in me so that His plan and His love for my husband could be fulfilled. My grand prize has been finding out that I can, without anger or resentment, "love him".
 And, that brings me up to current day and our new life.
The illness Robert has is a slow, slow process of losing part of the frontal lobe of his brain. It is called "frontal lobe atrophy". In the past five years he has lost the ability to walk at times and walked poorly at other times. His mind has been clear and then confused. He has been in a rehab/nursing home twice in order to be rehabbed to improve his motor skills. Many tests have been done and we have  often wondered what was next. My own health has been a problem and I have had two surgeries on my wrists related to helping Robert get up when he began falling. The progression of the atrophy has moved so slowly that we did not catch on when it sped up.
We recently ended up in the emergency room because Robert had suddenly lost the use of his legs and he was frightened. This did not last long but was enough for us to seek medical attention.
This time the doctor did not admit him. He told us that unless there were new symptoms there were no further tests to be run and no defensible reason for admitting Robert to the hospital.
We asked this doctor to give us the truth about what on earth was happening to Robert. He did. He explained that the good days would become fewer and the bad days more frequent. He explained how this illness can impact other parts of the body and for that reason far more serious medical events could occur. After a bit of conversation he told us that, based on his experience and the medical data associated with frontal lobe atrophy he believed Robert has about a year to live. Of course he stressed that his statement was not exact. Other factors could work to give Robert more years but based on his medical opinion we should act as if one year was our reality.
Boom! We were blown into a new life in a few seconds time. Shell-shocked by the news we drove home as if we had gone to the emergency room on firm, steady pavement and were returning home on an unstable and dangerous road.
A visit with the family doctor confirmed the emergency room doctor's diagnosis. Again, he stressed that no one can predict for certain but, based on his opinion, Robert should get busy living and doing what he loves while he still has the ability.
This is our new life. Our new reality. We are still coming to grips with the news. I have no idea what Robert will choose to do as regards getting on with life. Depression is a wicked mental illness. It strangles dreams and convinces us that there is no hope. This may be what will determine how Robert chooses to spend his time. We may end up watching t.v. and taking small forays from the house.
I have no idea how to negotiate the months to come or what happens next. I know one thing beyond a shadow of a doubt. I am just gonna love him and participate with him each day. God's plan has won the day. I love Robert and I'm not mad about it. That one sentence sums up the love God has for me and the depth of change He has made in my heart.
So, I am burnt out from writing all of this stuff. I'm going to do a wee bit of random writing before signing off.
I dyed my hair with the huge help of a friend of mine. The grey is gone. I have a younger look. Both Robert and my grandson wanted me to dye my hair. I am glad and they were right.
It is hot outside. I will be 65 years old in September. The knowledge makes me dizzy. 65 years old. Unfreaking believable. I planned to be a wiser older woman when I got to this time in my life. I have arrived a bit worse for the wear and a wee bit wiser.
65 is just a number. I can get medicare and that ain't so bad and I can look time after time for my glasses or ipad or pocketbook or clean clothes to wear and I can find them all in the oddest places. At times I stop to wonder what crazed person is moving my stuff around. I was going to arrive at this age with long, grey hair and a slender body. Blew it! Big time!
More to come if you are sticking around....peace!

Unraveling

The time finally came for me to unravel. Every message in my psyche is geared to surviving, standing strong, enduring  the unendurable. Over the years I have managed to meet that expectation to a greater or lesser degree. There have been times when I sensed myself slipping towards an abyss. There have been times when I pulled myself along inch by inch fighting to meet the expectation programmed into me before I could fully speak.
I did not know I had options, choices or the freedom to change an unyielding legacy. I learned to adapt. I learned to hide behind one mask after the other. I was attracted to people and situations that kept my self-esteem low and my survival skills on high alert.
Years have passed. I have been sober a long time. I have been drug free for a long time. I have allowed myself to seek psychiatric help for a long time. I am not the same woman I was years ago. Yet, I have continued to experience extreme stressors in my life. I believed I was condemned to the burden of an unyielding expectation that I could bear anything no matter the harm done to myself.
This year that belief system has been challenged. My mental health and my faith have caused me to look at my behavior. Friends have pointed out my Achilles' heel of a false belief that I could do all things.
Today the first crack in my armor began when I was at the doctor's. I was exhausted, out of resources, terrified of what would become of me and how I would manage my responsibilities. I could not see my way out.
For those of you who have been in that position you know the fear that comes with loss of control. Complete and utter loss of control. I could not think of who would look after Robert were I to be hospitalized or unable to regain my composure. I was sick with a virus that would not go away and my husband was diagnosed with an incurable neurological illness that had been ever so slowly taking part of him away for over five years now.
I cried and cried. My doctor wisely shot me up with an antibiotic and a steroid and sent me to see my psychologist.
The steroids kicked in, the love of doctor's and my friends, the many prayers pouring my way began to lift me up. I sensed myself regaining a bit of strength, a ton of humility and gratitude beyond measure.
Little did I know that I would soon understand the grace of God in bringing me to my knees at the perfect time. This post will end now and I will begin a new post. A new post that is the beginning of a new reality in my husband's life and in my life. Were it not for unraveling, being humbled, resting and trusting God this new time to come would have broken me. God is good. He is wise. He is love. His mercies endure forever and I will praise His name for eternity.