Gov. LePage and Maine’s Republican Legislature are attempting to eliminate care for people with Alzheimer’s Disease

Governor Paul LePage and the republican legislature in Maine are making a big effort to cut funding from the Maine Department of Human Services. It is predicted that this would have a huge impact on Alzheimer's patients in Maine, including my Dad. It would eliminate all rooms for Alzheimer's patients that are currently covered by Mainecare.


Here is today's article in the Portland Press Herald
http://www.pressherald.com/news/democrats-take-issue-with-mainecare-figures_2011-12-14.html

October 24, 2011

It has been such a long time since I last posted to this blog. My Dad's condition is more stable than I recall in the past. When I see him he knows me and remembers parts of the past.

I have been going through my Dad's stuff at his house looking for something. Perhaps a key to the past. I don't know. I have taken a few items that I really don't need. Things that my Dad loved.

As I have been looking though his stuff I keep realizing how my Dad was a keeper of the past. He was infatuated with history and a certain type of object it produces. At first appearance everything is in a state of mayhem. And perhaps, most curious of all are the many empty boxes. Mostly metal and some wood, they are usually at the lowest levels, on the floor. Upon them are stacked more boxes and finally just a pile of objects, seemingly random objects. It is impossible not to anticipate a treasure of some sort down below the stack and inside the box. But as you remove stack upon stack and finally reveal a box top and open the lid so often they are empty of anything except a dull and musty air.

Occasionally there has been an exception. Usually a box full of a certain tool or collectible, like a box or bucket full of screwdrivers or hammers or hatchets or wet-stones or brass door knockers or fishing gear or bullets or thimbles or sockets for a ratchet or wire or drill bits or nails or watches or oar locks bit braces or or what ever he chose to collect from the vast yard sales he attended.

I have been spending much time missing my Dad. As I have sorted through his stuff I often imagine him with me. Saying, Kev, you want that don't you? Take it! Take it! But I don't have a need for the abundance of objects he collected and neither does my sister. This stuff was his passion and fascination. And he sold only on the rarest of occasions, when he thought he was getting top dollar. He made it clear many times that this would by my sister's and my legacy.

I spent enough time with my Dad to know what he would consider valuable. He loved names and dates stamped into a part of a tool. He loved older tools that had hammer marks from tooling. He also loved tools from the industrial revolution. He didn't like plastic, except as a practical matter. He would constantly show up at my place of work with a hook or hammer and pass it to me. He would ask, “Can you read that, Kev?”

As time went on it was unlikely that I could. My eyes certainly haven't improved and the markings seemed to get smaller over the years. Patina was also important. He had learned early on that sanding, buffing, scraping was a no no. But as I have picked up many of his tools I can see where he lightly abraded around the manufacturer’s name and patent dates. This always causes me to raise an eyebrow which turns into a smile.

My Dad coveted most of his collection. Rarely did he give me something out right. And my sister has told me it was the same with her. When I would ask for something in particular it would take on an even greater value to him. I am talking about grinders, chisels, an axe. Not much really. I never had a strong interest in most of his things. I was interested mostly because he was interested.

Some of the tools he collected adapt easily to they type of work I do. Part of my business is making carved signs for homes and businesses. My Dad had a keen eye for chisels. And he did give me a set of superb carving chisels many years ago. And with a few other tools I have incorporated into my collection from his I do take particular pleasure in using something he acquired because he liked it. A hammer, a rasp, a wet-stone somehow makes an immediate connection to my Dad. I find myself holding his tool with more care and easily find content in the many thoughts evoked.

August 15, 2011

Yesterday I returned from a weekend trip from Westmore, VT. A friend owns a camp on a ridge over looking a glacial lake. The name of the lake is Willoughby. It is long and deep. My friend told me it is over 300 feet deep in parts. I drove up to Vermont alone, through the White Mountain National Forest. I past many places I used to go camping with my family when I was a kid.

The ride through Franconia Notch was especially beautiful. The majesty of the Presidential Range is inspiring. I really wanted to get out of the car and hike up with sketch pad in hand.

On friday (I am writing on Monday) I visited my Dad. As I entered Sentry Hill and found him, he looked at me for a moment and then connected. It is very satisfying for him to get a certain look on his face that signifies he recognizes me. He was sitting alone, in  a large room. It was quite hot, 90°s F, but I asked him to go for a walk. He readily agreed. We walked out of the facility and straight into the  sun down to Woodbridge Road. We took a left onto Axholme. He recognized where we were by pointing at the trafic at the intersection of Route 1A and trying to speek. He couldn't verbally expound what his thoughts were so I asked, "do you mean if you take a right turn up there you will come to York Village?"

He shook his head, indicating this is what he meant. We both walked forward on the dark pavement, both feeling hotter. I asked if the sun bothered him as a car went slowly past us. He said he didn't think so. We paused at a vegetable patch along the roads edge and he pointed out some cucumbers. We both share a zest for cucumbers and this became apparent to the gardens owner who was sitting on a deck within hearing distance as we saw more cukes and appropiately ooooed and yummmed.

Me and my Dad

Suddenly, my Dad told me he was very hot. I didn't know he would want to take such a long walk and didn't bring any water. He had two shirts on so I helped him take the outer one off. He had a lei around his neck. He didn't know it was on there. I asked why it was there and he had no idea. As we proceeded down Axholme Drive I told him I recently had a birthday and asked him to guess how old I was. He looked at me with sad eyes and told me he didn't have any.... but couldn't finish the sentence. I knew he meant to say money because he always gave me a one hundred dollar bill for my birthday as well as my wife and our 3 children. This day he couldn't even say it. I said,"money!" He smiled and say I don't .....and I said, "have any." He shook his head. I asked for him to try to guess how old I was again. He shook his head as if he was defeated. I said, "20?" He laughed. I said, "30?" He smiled as we walked past Foster's Downeast Clambake and turned the corner onto Route One A.

I then confessed that I was 51. I asked if he remembered being 51. He looked surprised and said no. I asked how old he was and there was some debate. My concern for his safety took precedent walking along a sidewalk with traffic moving hasty. As we neared our turn into Sentry Hill an lady offered us a cold drink from her porch. I declined and we walked up the hill to Victoria Court. A lady from far away called my name. I didn't recognize her immediately. My dad was 20 feet behind me and I was concerned about getting him up the hill. He was walking very slowly.

I showed my Dad the home in which my in laws would soon be moving into. We then turned and walked toward the main doors and I recognized the lady whom called my name. It was Judy, a nurse and she was with Marilyn, a woman who is particularly fond of my Dad. We sat in big overstuffed chairs next to them. We joked with each other and exchange pleasantries. My Dad didn't look at either of them and when I asked if he could see them he said not really. They laughed at this. I asked him if he even knew Marilyn. He replied, "just a little, not very much."

Again they were amused. We all got up, went inside and got something to drink and somehow as a group navigated our way back to Browning, the locked in area, where one needs to remember the code and to punch it in to ingress or egress.

I had a great visit with my Dad. He was alert, happy and really enjoyed taking a walk, I think it was about a mile.

July 21, 2011

Today, I have lived 51 years. I can't recall the day my Dad turned 50, though I can recall when he turned 40. I was so frightened. Forty seemed like a daunting age to an 8 year old, I thought he would die at anytime. I recall reading life expectancy in the 19th century was 35 early in the century and 47 during the later part.

In the last month I have recovered from what seemed to be Lyme disease. Within a week or less I was bitten by 3 deer tics. Initially I was starving for sleep. I went to my doctors and they did a blood test which came back negative and prescribed me 21 day of doxycycline. I feel so much better now. Although I wasn’t diagnosed with Lyme disease it seems the likely culprit.

Today is hot, 86°F. Quite humid, and very sunny. I am sitting on the deck, beneath an umbrella. Home alone. The only sounds are distant cars and the restless breezes stirring through the pines. It is a perfect summer day. A dog day. The exact kind of day I remember from my childhood. Lazy with boredom I would fall asleep in the living room, maybe on the floor where it was coolest and wake a few hours later. Still, it would be too hot to venture outside into the neighborhood. I never thought about it before but now I wonder what my friends in the neighborhood had been up to. Were they lazy like me, listless and without responsibility? In my mind now I will take pleasure in thinking so.

I ran 3+ miles this morning at Long Sands Beach. At first Sandra and I ran on the sand and then up onto the still cool pavement and headed to the track at York High School. I haven't run since last fall, maybe longer. My leg muscles felt like they were being bitten. My hips and knees ached, but I persevered. I new it would make my next run that much easier. On the track I ran 1 mile. No doubt at a 10 minute pace or more. I didn't feel pretty. On the other hand Sandra looked graceful and full of energy. Her strides on the track were long and poignent. She looked relaxed and fit. As I watched her continuously closing on me I tried to be inspired. But my aches and pains were working counter to my lofty notions. Finally, I stopped in mid track and stretched my aching legs. Wow! it was like a miracle for 100 yards. No pain. But then it came back. And now there was no option other than to accept it. Somehow I managed to run back to our starting point. We sipped coffee on the tailgate as we recovered an marveled at how beautiful the beach was, how vibrant and full of energy things were.

July 8, 2011

There are some benefits of having a parent debilitated...Father and Daughter grow closer

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.

Memories

It is inevitable to start sorting through my Dad’s belongings. My sister and I began doing this when we realized that it is our responsibility and it cannot be avoided. It is a very complex task with many gray areas. It is very sad and emotionally taxing.

As with most things there is an opposite side. And that is when we come across something of significance. My Dad was a collector. He spent many years frequenting yard sales and buying out peoples tool collections. So there is a vast amount of objects that he had no connection to other than he just liked them. The objects he didn't like so much ended up in his yard. He is a real Yankee.

Among boxes and stacks of stuff we came across his dog tags. He was in Korea in 1954. He is very proud of his stint in the U.S. Army. He didn’t have to confront the North Koreans as he was there toward the end of the war. He told me his unit was on high alert most of the time. He told me also that it was freezing cold and that if you left your face out of your sleeping bag at night (he slept on the ground) the rats would try to eat your nose. Some hikes were 30 miles on snow packed roads.

Along with other horrors they were often required to drink water from streams from which they could see fecal matter, although they treated it with “tablets.” This made enough of an impression on him that he told me many times during my youth and was a huge deterrent, among others, for me to consider a future in the military.

My Dad now remembers very few things, his name, his children’s name and his U.S. Army serial number. He can recite it on a moments notice. I never really new if he was right, I haven't seen his dog tags since I was a kid. Now that we have found them I too have remembered his serial number and can recite it to him.

At his stage of Alzheimer’s it is amazing to me that of all things he can still remember this. Occasionally he will ask about his truck or if I could take him somewhere. But I don't think he knows there are places to be taken because when I ask where he is quiet, without answer. I find him mostly asleep when I visit now. Head leaned over but always easy to awaken with a nudge.

January 31, 2011

My dad asked, “How did you find me?”

I replied, “I knew where you were dad, so I just headed in that direction.”

He marveled, like the concept was laden with mystery. His eyes wondered to someplace far away and back to mine and he smiled and said, “Jeepers.”

We took a long walk through the building. Many residents doors were open. Myriad elderly residents were posed in their rooms in wheelchairs before large screen tvs watching black and white movies with Carry Grant or Jimmy Stewart. There was one exception. A woman who may have been 90 was sitting completely motionless in a wheel chair watching an exercise channel. The woman on the screen was 20 something, vivacious, full of enthusiasm and vigor. She was jumping up and down coaching the woman in the wheelchair. "Ok, two more, and one and that's it! Now let's....”

As we passed by the room my Dad held up his hand. He could’t say what he was thinking. I said, “Are  your hands still strong dad?”

He said,“Oh yes!”

At the end of each hallway I would bring my dad to the window. At one window I said, “There is my truck, down there, the green one.”

The sun was shining bright outside. The large building cast hard shadows on the massive piles of plowed up snow. I felt sad that this wasn't my father's world, beyond the glass. The world that he had ventured out into for 80 years.

At another window there wasn't much to comment on. We both looked out, expecting more.

We eventually returned to the doors from which we had came with the keypad lock. A nurse or attendant held the door open for us and greeted my dad back. As she held the door open for him he stopped as if there would be a conversation. He re enforced his stance. She said, “Haven, sweetheart, you better follow that young man.”

He said “Oh.”

He followed me back to a large room where I had first found him. We sat on a window seat. Side by side. The slanting shadows, through the windows were behind me.

I told him I loved him and that I was going to leave. As I expected he interpreted this to mean he was coming with me. I hugged him and wished some how I could avoid the pain of tricking him to stay. He followed me to the door, I typed 1998 into the keypad and we watched the green light appear. As I opened the door I told him he had to stay on the inside and I was leaving. He further pushed the door open enough for his passage. Now we were both in the foyer, beyond the keypad.

“Dad, follow me.” I suggested. Returning back inside he followed me over to the nurses station. The nurse asked how she could help us.

I said, “Haven Freeman is as determined to leave as I am.”

She said,“Haven, why don't you come with me?”

As she walked him out into a large sun room in the opposite direction of the keypad door I heard her say, “Yes, your son will be here when we come back.”

As I typed 1998 into the keypad, opened the door and walked out into the sharp bright sunlight the pain followed me just like my shadow.