February 6, 2013

"Goodnight Dad, I will see you in the morning," I whispered into my Dad's ear as I left him last night.

Yesterday was long. My sister and I stayed with him as long as we could. Our thoughts seemed to be one. We wanted him to feel ok to go. He was breathing heavy at times and other times as gentle as a baby. He laid on his bed, making not a move. Less facial twitches than before. His eyes open slightly at times, maybe looking out, maybe just too tired to close them.

My sister was going away for a week, leaving him with me, the staff and the hospice workers. It broke my heart to know she wouldn't be there for him when he passed. She explained that this was a once a year vacation and she had to go. Earlier in the day and in preparation of her absence we created a recording of her talking and singing amazing grace, his favorite hymn. I read 23 Psalms and she closed with a heartfelt encouragement for him to move on to the next world as god and his family were waiting when he was ready. 

In the early afternoon we realized he may no be ready to leave because of the company we were keeping with him. Joined by my stepmother, Rita, we sang him lots and lots of his favorite hymns as he lay motionless except for deep arduous breathing. We expected he enjoyed our efforts and could not possibly feel alone. We were visited by many hospice people and a few suggested though his signs looked as he may slip away at anytime some people won't go when others are present. I suggested to my sister that I leave when she left as she needed to do some errands. We told my Dad we were leaving and would be back in about an hour. We very much wished he would feel comfortable about slipping away if it were his time. After leaving and upon my return he was still a mortal. I commenced to burn the recording we made earlier onto a CD. I put the CD into the boom box on his dresser and checked to see if it worked; it did.

There is nothing that compares to watching a life end. It is beautiful and terrifying at the same time. When I watched him gasping for air I wondered how I will do if I get this far. And I realized the joy he brought to his parents when he came into this world. They brought him in and now we were helping him out. It was a privilege without compare. I love my Dad and took great comfort in knowing how much he loved me and my sister at this epic moment in his life. 

It wasn't clear if my Dad was getting closer to passing as we moved into early evening. It was clear that his breathing was becoming accompanied by a rattle which was unnerving. We asked for more meds for the congestion and an increases dose of morphine. They upped his morphine from .5 mil to 1 mil. The rattling in his throat somewhat subsided and we thought the morphine may help calm him down as we prepared to leave. My sister and I both realized it would be the last time all three of us would be together in this world. As we made our way out we stopped by the nurses station and informed the staff my sister would be leaving for vacation but we have made a CD for them to play with our voices so that he would hear especially my sister's voice and reassuring message. They responded enthusiastically to the idea. My sister and I parted ways after a long day, a long week and a long experience with Alzheimer's Disease. About an hour after I arrived at home my phone rang, it was a nurse from Sentry Hill, her name was Shannon. She told me my Dad had passed. I called my sister immediately to confirm. She had driven back, yes she told me, he is gone. She added the staff said they had played the CD for my Dad and when he passed, she said, "that son of a gun was humming along." It was amazing to me he found the energy to hum. In fact I am in awe. He was so without energy, so helpless when we left him. 

Last night I slept a little but was very distracted. You see, I have never had a Dad die before. I had thought about it and what it would feel like many times. But last night it was real. Strangely, mostly what I felt was relief, not sadness. 

This morning I went over to Sentry Hill to pick up my iphone charger which I left behind last night. I felt OK until I got into my Dad's room. The bed in which he passed away on was right in front of me. His shoes right on the floor. His body had been taken to the funeral home sometime in the night. Everything was still there, just as I left him, except him. I took some photos off the wall and opened his closet. His clothes still hanging, many familiar shirts. The tears welled up and I just couldn't help crying and crying. I held the sleeve of a shirt as though he were in it. I knew I couldn't hold on but tried. I carried a few things out to the car. Started to drive away but was interrupted with heavy emotional outbursts. My face was contorted to the point of feeling embarrassed. As I collected my thoughts and feelings I could sense my Father everywhere. Suddenly, I realized the tears were becoming joyful. I looked out through the windshield and into the cold winter sky and tree line. My Dad was everywhere as the tears rolled down my cheeks.

I drove away from Sentry Hill and recalled the last words I said to my Dad, "I will see you in the morning."

June 12, 2012

I feel more sad than usual. My visit yesterday with my Dad was the most difficult it has been for a long time. And I should mention I haven't seen him in over a month. He was OK. He was happy to see Sandra and I. I don't think he recognized my daughter, Amber.

It was a picture perfect day in York Harbor, Maine. Hi 70's F° and clear skies. Right away he thought we had come to take him away. He couldn't say where he wanted to be but someplace was for sure. It broke my heart to know that I wouldn't take him away, to where he wanted to go.

My life is a balancing act with two business, children and more interests than I can possibly attend. It was really all I could manage to just visit with him for an hour or two. It is all so difficult to balance. Difficult to place everything in an order that I won't regret. And realizing that the perfect solution is just a compromise.

None the less it made me sad to see my Dad sad. I felt powerless. And since communication is challenging at best and often impossible it is hard to express my empathy to him.

Alzheimer's is a dreadful sentence at times. Sometimes I see it's unexpected symptoms as graces. Often when I leave him from a visit I feel nice, like I made him feel good. But yesterday he was sad.

I realized he is still very much a person and is still more connected to the world than one might expect. His speech is feeble. His thoughts are shattered when he attempts to express himself. But in his thoughts he wants, desires and is full of emotion. He is in one of the most beautiful settings in York Harbor, far out of reach for most. But his heart does not belong here. This is not the place that he built with his hands, the place where he collected his tools and cut his trees. This is not the place where he feuded over land boundaries, took dates, dug rocks, and piled stuff behind his house and cherished it all. But he is here. And it is comfortable and warm. There are many people who take care of him with care and pride. Who greet him in the halls with genuine warmth and sincerity.

Who are we? How did we arrive here and what is the right thing to do. I don't remember asking to be born. I don't remember asking to be responsible for the happiness of my Dad. I am not sure of all the choices we make. I feel that for my Dad to be in an assisted living facility, in a lockdown ward is convenient. It is also very costly. I don't know of other reasonable solutions. So here he is. With more of a broken heart than I realize. And here I am unable to get a smile from him.

A Little Music is Good for the Soul

The last time I saw my Dad a friend of mine, with whom I am in a band and myself, played music at Sentry Hill. It was two Sunday afternoon's ago. We set up in front of the residence with guitars, a PA and played for two hours. I have never played in front of Alzheimer's patients before but recommend it to anyone who is a musician or a wannabe.

These people were not free to come and go as they please, as in bars which I have played in the past. Nope, most cannot get out of a seat. Those in a seat, like a wheel chair have not enough strength to make haste for a getaway. So there they sat before us, my Father included. And we played for them. From our hearts.

As we played the help gathered around as well and it became quite cozy. We received delightful applause and occasional hoots and yipeeeees. It was a fun way to spend a Sunday afternoon.

My Dad and I at Sentry Hill in York Harbor, Maine

Since, I received two calls from Sentry Hill. The first was to inform me my father had swatted his lower false teeth out of an attendent's hands and broke one of the teeth. The second was that he fell into a fireplace as he tried to pet a dog which someone brought into visit the old people. He possibly lost his balance while bending over.

I miss my Dad alot. I miss my sons as well. It has been very strange to have two sons who are prospering at college and a Father who is declining monthly. They are all beyond my reach in a tangible way. And we are all disconnected from the family cohesiveness that I once enjoyed so much.

My oldest son has created an album that is very beautiful. Take a listen, it is peaceful and soothing...http://whorl.bandcamp.com/

I have recently been visited by my mother. She came by work unexpectedly. She asked if she could speak with me. I had a premonition that she may want to reconcile our differences. But no, her agenda was only remotely relevant to me. In fact she told me I was lying about so many things that I made her leave. It is odd to feel no love from a person, let alone my mother. I cannot get around the idea that she visited me and didn't bother to inquire about how I have been or share concerns, thoughts or anything about me. When I brought something up or replied to her questions she said only, "you are making that up," or "that's a lie."

My mother is an enigma to me and her actions become increasingly unresolved when opportunity favors her. There are few people in life that I get such little feeling from. Many complete strangers offer far more compassion and love. Thank God.

January 15, 2012

Today was cold. Mid teens, I think. 18°F +/-. I walked into Sentry Hill and found my dad asleep on the built in seats next to the windows in the common area. His head falling downward, his body slumped and silhouetted before the large windows looking out toward the glass looking frozen pond. I pulled off my jacket and turned to sit down next to him. He instantly awoke and looked at my face. He said, "Oh, Kev!"

He then, with a smile said, "I, didn't, huh...know, huh."

I was happy to be recognized so quickly. He asked how I got there. I told him in my car and offered him a ride. He readily accepted. We checked out with nurse Judy and I lent my Dad my coat and in no time we were off, cruising Long Sands Beach. My Dad kept saying, " That is a lot of boats, Kev," as we drove along Route One A. The ocean on the right and houses and motels on the left. I said, "Dad! those are motels!"

"No, they are boats," he acknowledged as he watched the houses bathed in crisp winter lights pass by us. 

We turned right and headed toward the Nubble Lighthouse. When we got there we stopped and thought about getting out of the car. But when I opened my door and walked around the back of the car and to my Dad's door and opened it I realized it was far to cold and windy. So I reorganized my thoughts and we drove along the coast. At each intersection I asked him for directions and he always indicated a direction that was furthest away from where we had started. 

I haven't had my Dad out for a drive in at-least a year, maybe two. I constantly challenged his memory and asked all along the way if he knew where we were, if he knew who lived in that house or where this road would take us. He asked me if I had been at Albert's (my great grandfather who died in the 1940's). I said no and asked if he had. He replied, "Yes, and what a bunch of stuff that happened there."

As we drove along I thought of how he drove me in his car when I was his young son. How we would whistle Amazing Grace in unison and how that I knew then neither of us were tone deaf (in spite of what others told us). On the same roads we were driving now and then, 40 years later. Finally, we came to my driveway. I asked if he would like to drive out to my house. He said yes. So we drove along the half mile ice and snow crusted road that I had first found when I was 10 years old or so looking for a fishing hole. Back then there was no gravel and no pot holes, just a soft bed of rusty pine needles. There was barely a road at all back then. It only the easiest way to walk out here and ghostly impressions of wagon tracks form many years ago. 

We pulled up to the front door and I asked my Dad if he would like to try a gun that I had recently acquired. He shook his head in agreement and I asked him to wait in the car as the icy snow had made everything treacherous. I ran into the house and grabbed the gun and ran back out to the still running car. I opened up the box and carefully unlocked the gun. I checked for shells though I knew it wasn't loaded and then passed the gun to my Dad. 

He looked like a child at Christmas who had been handed a toy gun. His face lit up and he declared it was real! I said, "It sure is." I asked if he would like to shoot it. He said, "Ah, let me see, why not, Yes."

I took a magazine and loaded 3 rounds into it. I don't know why 3, it seemed like not too many and not too few. I opened my car door and put the gun into my back pocket. I walked around the car and opened his door and released his seat belt. He maneuvered around and pulled himself out of the passenger seat. He stood up on the slippery surface. Once he was comfortable I withdrew the gun from my back pocket. I put in the magazine and told him it was loaded and ready.

I passed him the gun and he held it like it was his own. I told him to shoot at the target that I had placed 15 feet in front of him. He didn't understand. I told him it was the big black circle on the white board. He couldn't recognize it. I asked him to pass me the gun and I would show him. I fired a round into the target and passed it back. He held it again as if he were going to shoot but could not find the target. I suggested he fire into the air. He declined. I fired the remaining rounds into the target and we got back into the warm car. I locked the gun.

As I drove back down the driveway he said he had had a dream last night. In his dream he was holding the gun we were just using and he was in a place that he couldn't quite describe. I asked him if it was at his home. He said no. What about my Aunt's? He said no. I said what about Thompson's Meadow. He said yes. To clarify I asked him, "With my gun?" He said yes. He then asked if I could believe it. I said yes I could.

April 8, 2011

After not seeing my Dad in over a month I wasn't sure that he would recognize me yesterday. I consider not being recognized as the next step in his disease. When I first entered Sentry Hill he was no place to be found. I asked the nurses if he was in another section or had been taken out by someone. They informed me he was here, someplace. A further search revealed him in someone elses room, alone, asleep in a large stuffed chair in front of two bright sunny windows.

I entered the room and clumsily sat on the bed next to him. He was startled and awoke from his nap. He looked immediately at me and said, "Oh, you made it!"

I asked how he was and he said his back was bothering him. Not hurting, but he could feel it. He also said his brain was rattling. I asked him to clarify what he meant and he said it just rattled. It didn't hurt, it just rattled. His brain is shrinking. It is what happens when a person has Alzheimer's Disease. I didn't know what to tell him.

I asked him if he would like to take a walk around the building. He asked me if it was cold outside. I said we would stay inside. He got up using his own strength and we walked down the hall. The usual cadre of fans greeted us down in the corridors, each coaxing a big smile from my father and myself, as well. We came to a mirror and I thought it would be a fun way to get a photo of him and me. I stopped before the mirror and then recalled the mirror had been removed from his room at my sisters request because he had some uneasiness about it. But it was too late to divert his attention. He was standing beside me looking into the mirror.

He said he didn't look...and he struggled for a few moments while I clicked a few pictures and then responded, "Handsome?"

And then I reminded him how he is constantly told how handsome he is. He smiled and agreed. We walked on, past some hustle and bustle, past the front desk located in a large foyer. My Dad told me that he didn't have any money, nothing. He emptied both pockets. They were empty.

I reached in my pocket and offered him a dollar. One dollar was all I had. I put it in his hand and he asked what is this for. I told him in case he needed it. He passed it back to me. I suggested he put it in his pocket but he would not have it. We walked back, the length of the building and passed through the doors with the keypad. Back to his section which is called Browning. All of the sections are named after British poets. I wonder if Browning is named for Elizabeth Barrett Browning or Robert Browning.

Before I left we sat next to each other on a long window seat. It was very quiet. We were in a large room with about 15 others. A movie had just finished playing on the wide screen TV. It was a classic movie, some feel good movie. I could tell only by the static logo projecting on the screen. There was no sound except for two food ladies preparing dinner in a small kitchenette. Through the window behind us the sun warmed our backs. My Dad said, "my brain his rattling."

I looked at him helplessly. I told him I was leaving and he got up after two attempts and followed me to the door. I punched the numbers into the keypad. I hugged him and he hugged back tightly. He told me he loved me. I told him to knock on the door when he heard me knock from the other side. I passed out into the entry, past the keypad, past the solid door. I knocked. He knocked back from the other side immediately. It was like a game. I knocked again and then him again and we repeated this several times. Finally I summoned the courage to turn and walk away, keypad again and through another door. I was outside. My thoughts were full of my Dad.