Why hasn't anybody written a manual yet?

"I want to go the ocean. I want to drive a car. I want to be with my family. I am walking a fine line between being me and being lost; swept away. I want to go home. Why can't I go home? I will do the laundry and do the dishes and do the cleaning. Why won't you take me home? I can't stand this anymore." Your words were jumbled, your tears and sobs ripped through me, leaving me exposed with tears streaming down my cheeks.

We sit, side by side, shivering with tears and
distress. Confusion straps you in a roller coaster of delusions, magnificent and erratic. And all I can do is comfort you as coherent thoughts fade in and out and you try with all your might to remember, try to reshuffle the cards, spilling them like cards, falling flailing all over the floor; and one by one, your words are gone, your thought a fading memory. Rage follows, intruding in your attempts to remember, then anguish over broken brain circuits, broken dreams, and dead ends.


We have just attended Jack's high school graduation. The crowds made you feel unsafe, lost. You clung to your dad and to me, trying to remember why we were in the gymnasium with people, so many people. Trying to help you find your son, recognize your son, track as your son receives his diploma. You try, and the lights leave your eyes as the fog of this dementia once again forms a wall between you and your life.

You calm, and fall asleep. I continue to weep silently, thinking about the good times, all the dreams we hoped for.  Holding your hand, I watch you sleep, praying for peace but watching you struggle and cry out, "no, no." hands flying in the air as you attempt to fight the dragons in your dreams.

I pray for you. I choke on life cheating you as going on with life, enjoying our boy, laughing, playing, soaking in the warm sun and watching the milky way for hours in the deep of the night. I am so grateful for my life. I am so sorry I can not fix this for you. I hold back bursts of emotions, riding right there on my shirt sleeve because I am afraid of those emotions. They represent a lifetime with you of good and bad. Sometimes they hold me back from healing.

I wish there was a manual for this. I really do. But for now I do the best that I can.

A moment of truth. Beware. This may be too honest for you.

Sometimes knowing Bill is in a nursing home and I am out here in the world fills me with guilt and a sad affect. It can feel unbearable. I'm not sure if it is feeling guilty or feeling like I need to protect him. I've always done that. I've always been the fixer and I have always viewed marriage as a sacred vow to my Grandma Keller. She sat me down many times to tell me how special I was and to talk to me about picking my future husband. Choose a good man because forever is a long, long time was the message I heard from all my close family members. And I wanted that more than anything. We were a family of belly-wrenching laughter, of guitar sessions in the bedrooms, of entire groups of family singing around the piano. We were the Brady Bunch, the Partridge Family, and the Scooby Doo kids all in one. Thank God it was that way. Thank God. I would live happily ever after or die trying. I nearly have succeeded in the latter more than once, I am sorry to say. 

I realize now how difficult it must have been for Bill. I was all about family and he had very little to base his actions on. He had no siblings, he had lost his mom to cancer when he was in his senior year, ironically the same age Jack is now. I came with parents, aunts, uncles, cousins, a brother and his wife, and five nephews and nieces. He was a loner, estranged from his father since the painful death of his mama. When I look back, I think he actually began to change the moment we said "I do." I went from being his lover and adventurist to being the wife and one more responsibility in his never satisfied life. Bill always ached for more. It was medals in the service, recognition and a silver star award, education, a good job, more education, a better job, the raise, the promotion, the new shiny car, more education, a new career, more education.... Still we laughed, loved, and focused on our future. Still, there was always this aching need for Bill.... 

Our marriage wasn't a bad marriage. It was merely crowded, I believe is how Princess Diana put it when referring to Camilla. He had a lover for many years. Many years.  I don't know if there was anyone else before I had cancer, and I can honestly say our marriage ended, if somewhat briefly, right after our two year battle with chemo and radiation. It was an event that would have taken a champion boxer down in two rounds. He left after the doctors determined me in remission. He was gone for ten days. He came home and I took him back with open arms, so grateful for another chance. We healed; well, mostly healed, and we had Jack two years later. 

They met when our son was four, and were a couple until three years ago. I fought and actually left on four occasions. I loved Bill, and was easily swayed to try again, that things were over, and so forth. After so many years I guess I became numb to it. I confronted it when the evidence was blatant, knowing in my heart it would never be over. Still, I stuck to my vows, wearing them now like a ball and chain. Ahhh, hindsight.  I stuck with it, for better and for worse. Til Death Do You Part...I've heard it said that we can be our worst enemies. We, in essence as human beings make our own traps. My trap was I was being one of those girls that believed in happily ever after. 

I stuck with it and stuck with it until it was too late. He was diagnosed with Alzheimer's and now I am stuck in a sense. In another sense I am free. I am free of the  past couple of years and the domestic violence we experienced in our home. He has no memory that he divorced me to stay out of the nursing home. It has taken me over a year since Bill entered the nursing home, but I honestly feel I am healing from all of this past. I have been able to face and balance a hate and near bitterness with a peace that this part of my life is over. 

I have reached a level of forgiveness for Bill. It's helped me with my grief and in helping me be a better person. I can now look at the 15 year relationship with his mistress from a distance. I realize I had the power to stop all the pain many years ago. I just couldn't. I wanted my happily ever after and I loved my husband. 

This past has made my healing process both difficult and easier. I look at my husband today and almost forget all of the negative things we endured. He is fragile and sad and lonely. I sometimes feel an undying need to be at his side, to protect and heal as I have always done. 

Lately, Bill has forgotten it was me he was talking to many times. He started reminiscing about his times spent with Diana, talking about things they have done together, feelings unresolved, and. He asked me once if I "thought that was why Lyn put (me) in here (nursing home). It had almost killed her."  It did indeed. 

I decided to contact his lover about a month ago. It was time for me to put the past behind me, to relinquish control and the attempt to protect my own heart, and to allow him to resolve any lose ends or unresolved feelings in their life together. So I emailed, telling her where he is and why he dropped out of her life so suddenly. I knew they loved each other deeply to remain together after all these years. For the first time, it did not matter any more to me. It was behind me. 


And she did visit him, shortly after that. Staff said he didn't appear to have any acknowledgement or seem to remember her. He told them he thought she might have been an army buddy? Of course words are greatly jumbled when he speaks. I feel at peace because I gave him and her the opportunity to close any lose ends the may have in their relationship. I did it because I am free now and they can't hurt me any more. I'm by far not a hero. .... it seemed the humane thing to do. And I am free. Free to continue to love, to live, to look back without sadness. My freedom is not in terms of an ugly, angry divorce but in being healed. My heart sings again.

The Visit 4/2/12

 It's only been an hour since I called him but he's forgotten and all ready eating his lunch. The nursing home rushes to accommodate my change in plans. Bill looks at me, slow to react as if he were drifting out to sea all alone on a small vessel. His eyes are distant, cold, not recognizing me.

We eat lunch together and then move on to his room- room 405.  We start the video for memories. We talk about the weekend and the 4-wheeler ride I took him on over the weekend. It was quite the scene. My family sat back and laughed  because Bill was hell fire certain he was going to ride that bike by himself. Jack and I looked in horror and disbelief. We had gotten him on the bike. Would we ever get him off? Jack tried to squeeze in the front, but Bill held his grip on the handle bars firmly, chanting, "oh, no, Bill wants to ride. Bill wants to ride." I finally squeezed up front, and scootched his little ass back to the edge of the seat. I held his hands, and said, "You better hold on." I took off on the four wheeler, killing the engine twice. Bill did his best to say his hail Mary's and help me Jesus's. I revved that puppy up and off we went. I could hear Bill scream, "help me, help me..." then break out in thunderous laughter and then he whispers, thank you. This is nice."

I stay as long as I can, but the time to work is closing in. We talk about our next outing, as I try to offer him hope that I will return. I question am I hurting him or helping him? It feels harsh and heavy to leave, to go forward with freedom and a whole mind and a whole body. I know at home his determination to be free, to drive a vehicle, to come and go as he pleases is not safe for him or for us, as frustration in Bill can be violent and difficult to control. It is difficult to ignore the pain he is going through. 

I was robbed today

I was robbed today. I thought I protected myself. I thought I had covered all the bases. I'm stunned. I'm pissed. I feel like a victim. I feel like a fool. Humiliated,
humbled, shocked, embarrassed, stunned.... ok, how many adjectives can I possibly come up up? Oh, wait. Debased, disgraced... how do I tell my 75 year old mom that I was taken, robbed, that I owe another $5000 out there to my bank, now. Humiliation is a hard pill to swallow.



I was in my second week of training for my new job. I had posted my
resume/vitae on several business and academic type job search sites.  There was an interview. There was the offer. It was, in deed, a job too good to be true. It wasn't going to make me rich, but it had full benefits. It had insurance. And I would work from home.

I didn't answer right away. There were red flags. Was it legit? I read everything that was sent to me. I did internet searches. I talked to a couple of business friends. None of us could find anything on this company. It was out there, easy to find. It looked legitimate.

They needed to be able to transfer funds to me through my account. "Red flag" was my first thought. How much access would they have to my account?  They only needed to make deposits in my account. It was set up like a direct deposit, something I have done many many times. I know, I know. What were you thinking?

None of us considered the angle this company took.

For a full week, I trained: I read the site employee manual, learned about the steps in the process would complete. I talked to my bank to get information on guidelines for federal wires, limits on daily withdrawals, and so forth. Finally, this morning when I logged on, I found my first task assignment.

At 9 am promptly, I contacted my bank to learn my deposit was in my account and it was available for withdrawal. The bank initiated a 24 hour hold on the check, concerned with the authenticity of the source of the money. I waited patiently, feeling pretty confident that this was a legit company. After a few hours, the bank's main branch released the deposit, as they also could find no history of fraud or negative business.


I withdrew the deposit (not one penny of this withdrawal was mine. Feeling confident.)  I wired the money. I completed and closed the task. I felt good. I completed my first task successfully, earned a small commission, and earned a plus in the eyes of my new employer (I hoped). I got home, checked my Task Manager Office and learned I was awarded a $50 bonus. I was thrilled. I was seeing the light at the end of the tunnel. I had finally found a job that was going to provide my son and I with insurance and the chance to pay off the ongoing growing pile of bills accumulating since we first moved home when Bill was diagnosed with Alzheimer''s.

At four o'clock my bank called. The check used to make the deposit to my account had been found to be fraudulent. The funds would be withdrawn from my account. I was accountable for almost $5000.

All I wanted was a job. I moved here so I could take care of my family. Now that is what I want to do: I want to meet the needs of my family. I do not want to get rich. I do not want a free road. I want to earn an earnest living that pays the bills, provides the protection of health insurance.




I do not understand this evilness I have experienced today. Get behind me.

Tomorrow I work on applications again.

How old would you be if you couldn't remember how old you are?

Be soft. Do not let the world make you hard. Do not let the pain make you hate. Do not let the bitterness steal your sweetness.
Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place. Kurt Vonnegut

I frequently visit Bill in the nursing home. . We had eaten lunch together and had participated in the activities at the nursing home. We were sitting in Bill's room eating our winnings from Bingo and watching tv. 

"How old am I?" 

"I don't know, honey. How old are you?"

"Twenty-eight?"  

                                             

  

"Awesome, babe. That makes me 23." 

He looks at me, surprised. "You're 23? I don't think so. Good try, honey." Bill bursts out in laughter, examining long-standing dyed hair and the wrinkles forming on my face. "What are we? 40's?"  "Yep," I smiled. He seemed satisfied. Jack was born when Bill was forty. It was a time when we were elated with miracles. It was a time of happiness that outweighs even the purest of gold. Forty was the perfect age for Bill to be today. 

It was during our forties that Jack came to be and became our world. It is a wonderful time to remember.

Love isn't perfect. Maybe that's one of the reasons it leaves us with a deep emptiness. The need to be loved is a primal need.
It is the purpose of existence.

When love has existed and it is taken away from us, we grieve. That dark, terrible emptiness is the hole that remains where love once existed. 

We must fill that emptiness with something. We have to take the risk and love again. We fill that space with reaching out to others, to try to pick ourselves up and live again.  I am glad I love. I thank God for healing and for allowing me to be strong enough to comfort Bill, to hold Jack up and help him to also remember our roots, our past, the things that make us who we are, to make us strong, and to be the best we can be.

 

"When can I see , oh, what's the name, that town?" He stumbled to think of the words so familiar to us: home, Arlington, family names, and so on. "How's the cat?" "The dog? Maggie is fine. Missing you." He smiles, glad to know Maggie remembers him. We make plans for a visit on his "next day off." "When?" "Next week." "A month from now?" His face is grimacing as he tries to put the pieces of the puzzle within his head together. "No, just a few days, honey." "I won't remember." "It's okay, honey. They'll remind us. At our age we don't worry about dates any more." He laughs in agreement, and carries on with his jumbled thoughts until the visit comes to an end.

"Lyn, it's the nursing home..."

March 12, 2013

"Lyn, it's the nursing home. We're calling to talk about Bill's rapid decline."

Bill is adored at Prairie Sunset. He has become part of their family. Because of his young age (he just turned 58 this month), the staff have gone beyond and above to keep Bill involved and active. Up until this week, he would report in the Activity Director and Social Service Director’s office every morning after breakfast. He goes on doctor’s office trips for other clients, goes on shopping trips, and runs errands with staff. They invite him to their home. They love him. “I wonder every day I come in if he’ll be able to find the office today. Will I still have my buddy,” his social worker and sweet friend told me one day.

So this was the day the staff was all dreading. He can no longer remember how to help in Bingo. He needs assistance in bathing. He can no longer shave himself with a blade. He has to have his food cut up. When staff took him out to ride bikes (yes, they even do this for him), he rode right into the path of a bus. Staff was able to stop the bus in time, but it was the beginning of an end for this semi-independent activity that he loves. He shuffles. Even his verbal skills, his strong point throughout the disease up to this point, are noticeably failing. And sadly, I see the changes in his face.

I've seen the decline coming for some time. Since I see him once or twice a week, the decline was easily detected both cognitively and physically, but to hear those words, rapid decline, brought me to my knees. How do I feel; sad; numb; guilty? Whirls of emotions go through my body. A knot forms in my throat. My emotions are all tied up in a knot. How did we get into this quandary? A part of me feels relief. Isn't this the moment I've been waiting for: For Bill to no longer go in and out of being present; for him to feel contentment; to be happy? Will we increase his medications? Will this prolong his suffering; his sadness and frustration in knowing what he was, a successful and popular Professor and what he is: lost in the fog of his own mind?
And then the doctor spoke those infamous words, “there’s nothing more that we can do.”

We walk to the van. I look down to the ground not sure what to say. Bill reaches to me. My eyes meet his. “I need a car. I’ll even let you drive it.” I can only laugh, knowing that all that has been discussed has either gone over his head or he has already forgotten. “That’s an interesting idea, honey. We’ll bring it up to the Dr. next time.”

And our life moves on.

Physician, heal thyself

We all know that life is a wonderful but painful journey. Sometimes the bravest thing we ever have to do is accept a different answer to a wish, a dream, a hope, or a prayer than the one we were asking for, and trust that it is still going to work out okay in the end.

We are not meant to stay wounded. We are supposed to move through our tragedies and challenges and to help each other move through the many painful episodes of our lives. By remaining stuck in the power of our wounds, we block our own transformation. We overlook the greater gifts inherent in our wounds — the strength to overcome them and the lessons that we are meant to receive through them. Wounds are the means through which we enter the hearts of other people. They are meant to teach us to become compassionate and wise.