Walking in the Valley of the Shadow…a Dawning…

There were many times over the past 1 1/2 years that I thought of writing about something and lately, I realize that I miss my blog.

When I wrote the last post, I was tired and it seemed that all my heart could do was bleed. Words didn’t come to me. It was a constant moan that permeated my being.

Each day was the same. It was a fog of nothing new. It was the same old thing. Get up. Get dressed. Go to work. Come home. Numb out on TV….

As the next year unfolded and through the battles to get the right care for my sister with Down’s Syndrome and dementia, I began to come out of my self-pity and self-imposed isolation. I realized that my mental depression and fog of existence was self-imposed. My sister’s was totally without choice. I needed to grow up. I needed to grow out of this Valley of Death where I had grown so comfortable.

I realized that the part of me that I shared on this blog was the inner most part of my being. When I stopped posting to this place, I lost communication with that vital part of myself. My isolation was most definitely was self-pity. I needed to come to terms that my life was according to my choosing and not Dan’s dying.

I am choosing to live. Even though I walk through this new and different Vally of Death with my sister, I am seeing so much of me  fears the evil of isolation.  I need to stop being afraid.

Because I am not writing in real-time, it will take some efforts to organize my thoughts.  Every detail doesn’t need telling. What needs sharing are the lessons learned from continued living. Lessons need  to be carried forward. Those are the stepping-stones that lead out of this Valley.

For now, I am not changing the face of the blog or going through the efforts of having a second site. I am going to continue on with this journey. It is all the same really.

 Hopefully, I will be faithful to myself to write on about living and not the process of dying. There is a new dawn. It has to start somewhere. It must start where I stopped. There is no other way out of this Valley but to walk it.

Seeing Beyond The Veil…Part I

There are so many mysteries that we can never know while confined to this existence. I have always been fascinated by mysteries and now I have one that has had my attention for the past few days.

As I have written in past posts, my husband’s mother has the diagnosis of Alzheimer’s. I have come to believe that everyone who has memory loss or what was once called “hardening of the arteries” or ” senile dementia” is now given the Alzheimer’s diagnosis….truth is, this condition can only be diagnosed and confirmed by autopsy. I personally believe that it is a pharmaceutical ploy to get people to want their doctors to give them the new drugs in the hope that something can stop the progression of this condition.

I, personally, do not believe that these drugs do anything other than cause terrible side effects for those who suffer from loosing their memory and identity. Both of my “in-laws” have taken the drugs and both have not improved. They also suffered from side effects that compounded their quality of life.

It was last Christmas that my husband and I traveled the 2 hour trip because his mother’s dementia worsened and it seemed a sure bet that she was leaving the hospital and going into a nursing home. On Christmas eve afternoon, Mom’s mind cleared and she knew her surroundings in the present. This avoided the nursing home entry and we all rejoiced to “have her back”. She was released from the hospital that day.

My husband and I were at his parent’s home when she was returned. As she came through the door, she seemed to relapse into the fog of confusion and began to talk about her mother, who has been gone since 1967, and a sister who is in a nursing home in Chicago.

After witnessing this, my husband took out of the house for a walk.  I knew that he went to walk through the tears that had welled up into his eyes. He loved his mother and he just couldn’t bear to see her like this.

This episode didn’t last too long and by the late afternoon, she knew where she was and she was back into the present. This was a Christmas gift that we hoped would last, but it slipped as the days and months progressed.

From that time to this, Mom has walked farther down the road of dementia and so has Dad. It is a surreal world that they live in. Many things are a sad comedic situation to watch. Yet, they seem to find contentment that is derived from each other’s presence.

Their journey only deepens into  obscurity. When my husband died, Mom had moments where she could grasp what had happened, but they were only fleeting. When my aunt talked to her after the service, she mentioned me to Mom. She replied, “I don’t believe I know her.” My aunt told her that I was her son’s wife then the conversation turned to something else.  My aunt knew that there was not much more she could say or relate to Mom.

I called a few times after my husband’s passing. It was clear that neither Mom or Dad knew who I was and I tapered off contact. It caused pain upon pain for me and there was nothing that I could do to enrich the quality of their lives.

This past Sunday, Mom fell in the kitchen and broke her leg. The break was severe enough that a total hip replacement was necessary. The effects of anaesthesia on the brains of the demented is devastating. They seems to loose so much ground in the land of reality. So it was with her.

I did not know about her fall, but Tuesday evening, I called my husband’s brother and asked, “What is wrong.” He told me about the situation and that this was definitely the time that Mom would be going into the nursing home. He told me the details and then we said, “Goodbye.”

During the night, I dreamed of my husband. The events in the dream were sketchy, but I definitely knew it was him. It was a dream of him. I was relieved. I needed to dream of him.

When I woke up on Wednesday, I recalled the dream and I felt a need to represent my husband at this moment in the life of his mother. I knew that Dan would be there if he was able and I also knew that he would be there even if he wasn’t able. 

I called my brother in law and said that I knew the kind of pain that comes when you have to place a parent into a nursing home. I explained how heart wrenching it was on my sister, but she and I made the decision together. We also went to the nursing home and signed the papers together. I told him that this is easier if you don’t have to do it alone. I told him that I would come up and be with him, I would represent his brother and we would walk this event together.  His brother said, with relief in his voice, “Thank you.”

So, on Friday, I drove the 2 hour trip and met my brother in law. He showed me all of the paperwork and told me of Mom’s present condition. He said that she didn’t have any moments of lucidity and that Dad had stayed the night at the hospital because she was so frightened. She is a “sundowner”

That is a term used in the nusring industry to describe those whose dementia worsens at sundown. I have witnessed some to be lucid throughout the day only to slip into the fog of dementia as sunset approached. It is a common effect of the disease.

The doctor said that Mom would be released over this weekend so I wanted to go and see the facility.  While there, I was able to talk to the Director of Nursing. I asked about the training for the nursing assistants regarding a fresh post op hip replacement. I discussed the concern over Mom popping the hip replacement out.  This is common if a patient crosses their legs or if they fail to have proper alignment while they are in bed. I asked if there was enough staff to cover this fresh surgery. I also asked her how this facility was going to deal with the complication that Mom’s dementia presented.

Most dementia patients do not know that they have a broken leg or a condition that prevents them from walking. So, the patient will try to get up and walk to only fall again and exacerbate the original injury. This can lead to a second surgery which, in turn, causes more deterioration of the mental condition.

I asked her how close Mom’s room was to the nursing station and what was their care plan regarding prevention of pressure sores. I finished with the comment that this case would be “a squeaky wheel”. The DON smiled. She understood what I was saying.

“The squeaky wheel gets the grease” is an old saying used in the nursing home industry to categorize patients whose families are always present and have no qualms about complaining about the care that their loved one receives. I purposely wanted her to know that this family and their friends would be coming in to see Mom at all hours of the day and night. I believe that my comment was understood as a forewarning from the family to the facility.

I found that the best way to ensure good care is to let the facility know that we would have no qualms about insisting on good care. Even though I cannot be there often, my husband’s daughter will fill this void. She worked in a nursing facility in her town and she has training in dementia. Ensuring Mom’s care  was another purpose of my 10 hour trip.

After the meeting, I left my brother in law and went to the hospital to see Mom.  Her sister was sitting beside her bed calming her fretfulness. I entered her room expecting her to not know me.

“Hi, Mom.”, I said. I told her my name. The first thing she said was, “Dan is here. I have seen him.” I thought nothing of this. Then she said, “And so is your brother.” She then turned to her sister and asked, “Is the funeral over?”

By that comment, I was convinced that she knew who I was and how I was connected. But what caused me to pause and think was her comment that she saw my brother.

The aunt thought nothing of what she said because the aunt was unaware that Mom knew my brother. Her memory of him would have been from when they lived down here and pastored my church.

My brother was my husband’s employer. My brother was the one who taught my husband how to drive a semi and by doing that, my husband always had employment.

Dan spent a lot of time at my brother’s house. They both loved cars and,  when my brother bought a 1970 purple ‘Cuda that had the highest performing engine that Mo Power ever produced, Dan was the first person that he showed his new car to. That was an honor. My husband and my brother were so very much alike.

For Mom to recognize my brother in her room, it meant that he had to look like he did in 1970…

My brother has been dead for close to 20 years When I entered her room, she saw the two men that I loved most. Both are dead. In her dementia, could she be seeing “behind the veil” that is between this world and the next?

In The Living Year III

As I write my husband’s life story, I see more and more the hurt and anger that festered inside of him. This all began from trying to be the “good son”, the obedient son, and the frustration that came with his efforts. These emotions spilled over into his adult years as well. As a son, he was always obedient, with a “twist”.

An example of his being obedient with a twist was when his father wanted him to drive the church bus. This happened when he was in his early 20’s and he drove a “big rig” since he was 19 years old so, naturally, he could drive a bus. However, at this time in his life,  he didn’t attend his father’s church. He had enough of church by the time he left his parent’s home. But when his father asked, he always obeyed. On his only day off of work, he agreed to pick up all of the kids and others who needed transportation to church.

Keeping true to his rebellion, he would pick up the kids and others, let everyone off of the bus at the church, then, he would pick up all his “hippie” buddies. While everyone was at church, he and his “friends” would smoke up the bus with a little “weed”. He did as he was asked and then did as he wanted. Yes, this wasn’t very wise, but it was so like him and his way of being obedient with a “twist”.

Over the years and after two divorces, I think his parents “gave up” on him. They gave their approval to the second son and because of the developmentally delayed status of the adopted son, they reserved most of their concern and attention for  him. They knew that my husband could take care of himself. By his early 30’s, my husband had a true love/hate relationship with his parents. This lasted for the majority of his life. I think that it was the same for his parents.

I should clarify. Over the years, time was given to my husband. It was not done from a willingness or a parental concern, but it was done in the midst of crisis or drama. My husband’s choices in his early life always brought these elements with him. He received attention.

Much like when a child needs attention and they are unable to get it positively, they will act out and receive it negatively…that seems to be the operating principle over my husband’s youth and young adult years…

As the effects of life wore on my husband and his restlessness abated, his need for peace and contentment finally won out over his need for rebellion.

Over the years of our marriage, my husband and I “worked” on his “Father Hunger”. We bought books, tapes and listened to sermons that addressed the unending needs of an adult child when they lack a relationship with their father. My husband knew that his father was repeating in him what his grandfather sowed into his father…not much time or thought.

In 2003, my husband’s mother was diagnosed with Alzheimer’s dementia. She knew that something was wrong and when they finally told her, she began to become frightened of her future. My husband tried his best to reassure her that he would always remind her of whatever she forgot. He could remember things that happened when he was 2 and 3 years old and his parents were always amazed at his accuracy.

In 2005, a CT scan of his father’s brain showed atrophy and he too began to not relate to the present. He seemed to go into a trance and do whatever my husband’s mother bid him do. He seemed to cease being an individual.

On several occasions in those early days, before my husband’s cancer was diagnosed, we told his parents that, since we lived close by that we would help in any way with whatever they needed. On many occasions my husband would go over and “check” on them.

He tried to have a conversation with his dad about things that were on his mind, but all he received was silence. 

Many times, after the fact, we would find out that they called on someone else to do what my husband said that he would do for them.  I could see the hurt in my husband’s face  with each one of these occurrences. His heart was bruised again with each incident…..He finally gave up on the hope that he could resolve his issues with his parents. He had to let them go…

In the months prior to his passing, he gave up on calling them. They didn’t remember that he was sick or they remembered that his brother had prostate cancer, but didn’t remember that he was sick. He felt worse after trying to talk to them and, afterwards, it drained him emotionally so he stopped calling. For him, It was too painful to bear their dementia and his cancer.

The final week of my husband’s life, I spoke to my husband’s brother about whether he should make the effort to bring my husband’s parents down to our home. Traveling was a  difficult task and both my brother in law and I knew that they would not remember being here or seeing their son.

It seemed that my brother in law and I came to the same conclusion at the same time because as I called him, he was about to call me. I said that it didn’t matter if they remembered seeing my husband or not. If it were one of our children, we would want to see our child, so it must be with my husband’s parents.

By this time, my husband was unable to communicate with us. His level of consciousness was anyone’s guess at this point. When my husband’s brother said that they were coming, the children and I cleared space for chairs to be by my husband’s bedside…

I was not feeling well that day. I was having a major physical reaction to knowing that my husband was hours away from dying. The hospice nurse had instructed me to take my anti anxiety medication and lay down. I was sleeping when they arrived. The children assisted them.

I woke up after they had been here for a couple of hours. I knew that they would not stay much longer than that. As I lay on the couch between being fully awake and still drowsy, I heard something amazing.

My husband’s mother was talking to him in that voice that every child knows. It is the one where you are sick and your mother’s voice is as soothing as any medication or medical remedy. My husband couldn’t see his mother because she was standing by the window and he was facing away from it. The next moment I heard a cry come out from my husband.

With every ounce of energy he had left, his voice rang out, “Mom!!!”. No one will know just how difficult it was for him to say that word! It was his desperate attempt to reach her and It took every ounce of life left in him. All of us knew that she could never appreciate that is was one of his lasts words heard on this earth.

In many ways, it sums up their relationship. He was crying out for his parents and they never truly heard him. They were always lost in a fog when it came to their first son…

Yes, my husband’s parents are still living, but they are not here. They are in a place of confusion, a twilight of shadows, that robbed my husband of an opportunity to express his love for them and they for him. We think that we have years and years to tell our parents the hidden things, the wonderful treasure of memories that we have of them and us.

The reality for my husband was that, even when he tried to overcome the obstacles that were in their relationships, they could never listen and hear him. That moment of reconciliation never happened for him.  Dementia took his parents before death took him.

It is during the act of living that we take the opportunity to tell those we love how we feel. It is in the memories that we make that we feel their love and acceptance. It is too late for my husband and for me to express ourselves to our parents.

Now is always the best time to tell those you love how important they are to you……Now is always the best time….

There Are Darker Shadows Than Ours

My stepdaughter has a blog (http://waterdeep25.wordpress.com) .  She decided to follow in my footsteps by starting her own blog. She, too, finds release in writing and blogging about her journey through her present pains.

Today’s posting is about her grandmother. She titled it “Grandma’s Hands”. Her grandmother’s hands are the hands that nurtured her father, prepared wonderfully tasty meals, made cookies and all sorts of divine sweets and played the piano and organ as if she was born touching the keys. She is the definition of a “Natural Talent”.

In my stepdaughter’s lament, she recalls the living loss of a grandmother who is bound in the darkest of shadows called Alzheimer’s. Grandmother isn’t alone in these shadows, her husband, my stepdaughter’s grandfather, also has dementia…Both are challenged to find their daily lives each and every day.

No matter how lost they are to this world, they have not lost each other. They are in these shadows together. They laugh at each other’s jokes and they have conversations about the location of the last thing that they misplaced. Watching them, at times, is better than watching a sitcom. Then, there are the not so humorous events.

One of my husband’s greatest heartaches is that he is lost to his parents. They continually “forget” that he is ill. I can’t count the times that they tell him how deathly ill that his brother is. His brother has prostate cancer, but it is arrested since his surgery in January 2005. They seem to never quite grasp how close to death’s door that my husband is and this wounds my husband’s heart.

He knows that they are not responsible for this, but that does nothing to stop the longing for his mother’s touch or for the comfort from her voice. He is still that son that doesn’t want to be forgotten and forever lost to them in the shadows.

He calls them knowing that within the time of the phone call, it is forgotten. He finds little comfort in calling, but the sense of duty is still with him. His greatest joys are when they know his voice and that they remember to inquire of his health.  We didn’t tell them about my husband’s last hospital visit because it is gone by the time the next sentence is spoken. Everything gets swallowed by these monstrous shadows of dementia. In all essence, he knows that he is orphaned. He feels this feeling of loss before there is actual physical loss.

This disease is one of the living dead. They still walk and they are still able to talk, but  one of mot precious possessions that is needed the most for our comfort  in our twilight years are our memories. The reality is that the life that they lived is gone, gone in this confusing fog called living. There are some consolations. The memories of their youth are still with them and they are “spot on” when it comes to events that are 50 plus years old.

As my stepdaughter continues with her memories of the loving grandmother, the shadows of the disease grows and steals her love. She will always love this pretty lady that she recognizes as her grandmother. But it is the memory that she loves more. All of these sorrows for such a young woman to bear….and she knows more than most that these shadows will grow to their final stages of darkness.

She works daily with this terrible disease. She knows the stages and the ending. She works in a nursing home and each resident appears as a ghostly shadow that foretells her grandmother’s future.

There are no words for this kind of sunset. This disease is nothing like as it was portrayed in the movie, “The Notebook”. In the movie, the unbearable thought of separation ushers in the couple’s simultaneious death. Only in Hollywood does this ending occurs.

In this “story”, there is no drying of tears and turning off the DVD to continue on with life. Day by day, life is filling  time, waiting for the inevitable, watching and wondering when the end will finally release them from the darkest of Shadows…..the deepest of nightmares.