Concerned about Alzheimer’s Disease? Read “Still Alice” by Lisa Genova.

HStill Aliceave you ever thought about Alzheimer’s disease as it relates to you? Do you have a relative, perhaps a parent who suffers from it? I did. My father. Many thoughts and worries have surfaced since he was diagnosed with “symptoms consistent with Alzheimer’s”. The only way to know for sure if it’s Alzheimer’s or some other form of dementia is to perform an autopsy. At that point, it doesn’t seem to matter so much, what it was that caused the loss of memory and motor skills and finally, death.

I believe it was Alzheimer’s but I’m not sure it matters. What matters to me now is, is it hereditary? Will I get it too? Probably? Maybe? Every day I look for it. Am I forgetting too many things? Is it that I forget or that things just seem to skim the surface of my consciousness? I am preoccupied, I am not paying attention, I just don’t care enough about that particular fact. Maybe. Maybe not. I don’t know anything for sure.

My friend suggested I read a book called “Still Alice” and I did. I just finished it and it was wonderful and highly recommended for anyone, whether you have people close to you suffering from it or not. It was written by a woman who has a Ph.D in neuroscience from Harvard University and is an online columnist for the National Alzheimer’s Association. Combined with that knowledge, and a definite writing flair, she has crafted a fictional account of a woman besieged with early-onset Alzheimer’s. The woman is only fifty when she is diagnosed.

The novel is written from the POV of Alice, so the reader identifies with the confusion, the uncertainty, the despair she goes through as the disease progresses. Alice can only sit and watch her life fade away, as she struggles to hang on to memories of her husband and children. When she can’t remember their names, she still remembers them. She knows they are her son and her daughters, but fears she doesn’t know this through understanding, but because they keep telling her.

She struggles to understand as her family talks around her, as if she weren’t present. She wants to tell them things but can’t get her thoughts out fast enough and forgets them anyway. She hallucinates and believes there is a hole in the floor that she must go around. She tears the house apart looking for things but then can’t remember what those things are. She can’t recognize herself in the mirror, because she thinks she is a young girl. She confuses her dead sister with her daughter.

It’s powerful, the thoughts and fears that Alice experiences. And the writing is brilliant, very moving, and educational too. Add to all that, the development of some very fine characters and you have a novel well worth reading, not only for the knowledge it imparts but because it is a moving story. I hoarded this book. I didn’t want it to end.

I thought of my father, as I read it, and wondered how much of this he went through. No one knows for sure, because no one who is going through it can tell you what it’s like. We watch our parents suffer with it and yet, on some level, we think that won’t happen to me, or I’ll deal with that later. This novel brings it home, makes it real. If you aren’t comfortable with that knowledge then this novel may not be something you’d care to read.

I’m glad I read it, but up until now, I don’t think I was ready.

Tax Day Will Never Be The Same

alzheimerribbonIt was one year ago today, April 15, 2012, that I lost my father to Alzheimer’s disease. Without the drugs and procedures which kept him alive, I might have lost him earlier than that, but thanks to pacemakers and blood-thinning pills and blood pressure medicine and a myriad of other things, we were able to have him until just last year, when he’d forgotten so much that I think he simply forgot how to live.

I was not with him when he passed away. If only I could have known when it would be, of course, I would have been there but I thought he’d be around for quite a while longer. The ironic —  no not ironic, more like tragic — thing was, I had considered going to visit him that weekend but didn’t. No excuses, I just didn’t go. It’s a six-hour, two-night hotel stay, so I opted not to go. I probably had something else going on.

What could I have had going on that was more important? Well, funny, I can’t remember. I had been hearing things, he’s losing weight, he’s having difficulty swallowing, but still, I didn’t go, because I thought there would be other weekends.

But then the call came, and it was too late. He died alone.

My Dad was a big man, 6′ 3″, over 200 pounds for most of his life. When he died, he was tall, but not big. He’d fallen to 155. He didn’t know anyone, he pretended he did, but if I’d asked him what my name was he wouldn’t have been able to tell me. So I didn’t ask.

The last time he recognized me was in January of 2012. He had me, and his son-in-law, and his two granddaughters with him that weekend, and he was so glad to see all of us. But visiting stressed him, because I think he knew he was failing in some way and didn’t want any of us to see that. He always seemed to cut the individual visits short, but was happy to make plans for the next one.  So we visited him for short periods, three or four times a day. He seemed to like it that way.

The last ten months of his life went like this. In June of 2011, he was living in an Independent Living Facility with his wife. My stepmother wanted us to come. Something was wrong. The doctor came and his heart rate was so low she said, get to the cardiologist, immediately.

The pacemaker had malfunctioned. So he had to have a procedure, and then rehab, and in his confused state he declined and the recommendation was that he needed to be in an Alzheimer’s care facility. So off he went. He still didn’t know what was happening and never knew he had the disease. While he was living there, we’d visit him and there were other patients with differing levels of dementia. One woman liked to go barefoot and she couldn’t talk and she was constantly fluttering around and she’d pull up a chair and sit within any circle of family members visiting their loved ones.

“She’s got Alzheimer’s,” my father whispered.

Everyone does here, Dad, I wanted to say. But I didn’t of course. We’d never told him and it was too late to do it at that point because he’d never understand.

Shortly after the January visit, he fell, went to the hospital, and they decided he needed even more care so he went to a skilled nursing facility with a lock-down unit.

The changes within that 10-month period were too much for him. People with dementia don’t tolerate change well. I believe too much happened too soon. He no longer knew who we were. On one visit, he babbled about his home town to a guy sitting next to him while we sat there, not knowing what to do. Pretty horrible.

I got the idea to write this post from Stevil who wrote a post about his father and how his father always seemed old to him. It was just a couple of days ago, and he included an old family photo. It gave me the idea to do the same thing. Here’s a picture of the Happy Family before the Usurper (brother) came along.

Tax DayAs Baby Boomers, many of us early ones have already lost both parents. Some are lucky enough to have one or both of their parents still, but not too many do. And the younger BBers will soon be, or already are, dealing with aging parents issues.

Alzheimer’s is especially heinous, I think. It scares me because now I have that hereditary proclivity for it too. None of my grandparents had it, and all four lived long lives so maybe I’ll luck out. Or maybe not.

We are more aware of dementia because we’re living longer, kept alive by drugs and surgeries. My personal choice is not to take prescription drugs just because they’re prescribed. I will take what I need to prevent certain things (like stroke) that could cause me to be a burden to my family.

This will not make me to popular with some, but I wonder if it might not be better to let nature take its course a little more often. The pacemaker and a myriad of drugs kept my father alive. But he had Alzheimer’s. I wished there was just one drug that could cure that.

I worried that he’d be scared, as you hear all Alzheimer’s patients go through that period when they know something is seriously wrong and are agitated and confused and afraid. Then they settle in to the final stage, and the fear goes away, but so does all remaining cognition.

Alzheimer’s is the worst. It’s horrible for the person going through it, and it’s horrible for family and friends.

Now, I don’t think of the last year of his life anymore. I choose to remember him the way he was before that.

Goodbye, Dad.

Remembering the Pancake Man

Today I don’t feel funny and I don’t feel creative.

I lost someone Sunday, April 15, 2012. Someone really close to me, and I knew I would lose him soon but that doesn’t seem to make it any easier. I’d watched him deteriorate through the abyss of Alzheimer’s disease for years, and for the past year have seen his steady decline.

The man is my father, who lived an ordinary life, and the life he wanted to live. He was a better father to his children than his father was to him, which I found quite extraordinary. How can a man be better at fathering than what he had known? My father did it.

He had four brothers and one sister, and was known as the “nice one”. The others were apt to be a part of fights and various altercations in bars and roller skating rinks around town. My Dad was the one who calmed everyone down and got them to see the other side.

All he wanted was to have a family, and be moderately successful, and be able to eke out a living, since he was uneducated (having dropped out of high school at 16 to join the CCC in order to help out his family during the Great Depression).

He was the kind of guy that everyone liked, they knew he’d never cheat anyone, that being known for his honesty and integrity would always be more important than wealth. And he always said he’d been lucky in his life, and that seemed to be true. Whenever it looked like the end of the financial road, as he was starting up his business, something would happen to kick it down the road a little further.

Everyone loved his stories and while not always politically correct back then, he did tell one funny joke. I’ve seen him entertain groups of twenty people with his rendition of the “Dippy Dippy Blue Cheer” story.

I wrote an essay about him, to be entered in a contest sponsored by Real Simple magazine, which of course didn’t go anywhere. I’ve never won anything in my life, not raffles or lotteries or even football pools, let alone a contest where I’d be judged against my better peers. The essay was to be about the first time you knew what love was. Kind of a sappy topic, but I decided to try it.

Here it is, dedicated to my Dad.

 

Pancake Man

 

It was the 1950’s and give or take a year, I was seven years old when I was introduced to the joys of asthma. But this story isn’t about me, it’s about my father, and what happened as a result of my illness.

My dad grew up poor. His family was not wealthy, not well-to-do, not even middle class. They might qualify for food stamps today, but back then they muddled along and each day was a challenge.

He didn’t finish high school but went into the CCC to help the family, then to work in the oil fields, then into the army where he fought in World War II. Along the way, he met my mother and fell in love. After she came into his life he wanted different things. Marriage, family, respectability and hope for a better life.

And he got that better life. We struggled some, but not more than other families. He worked hard at his sales job during the day, and fixed up our rundown house at night, and still found the time to be a devoted father to my brother and me.

We didn’t eat meat every day, sometimes it was a pancake supper. Dad liked to pour the batter onto the hot griddle in shapes. Big pancake stomach, smaller pancake head, dribbled arms and legs. It’s Pancake Man! In his excitement, my brother banged on his highchair and spilled his milk. My mother complained. Oh, it’s just a little milk, Dad said. What can it hurt?

He was the calm one, the patient one, the one to be counted on. What’s a little milk on the floor? He asked. To be fair to my mother, she was the one on her hands and knees cleaning up the milk mess. She wanted everything just so.

My parents took my brother and me to a strawberry farm one afternoon, owned by friends of theirs, a couple who had two kids around our same ages. We, the kids, raked up a big pile of hay in the barn and jumped in it. I tried to ignore the sneezing, and the itchy eyes that came on, but at some point I became very uncomfortable and took refuge in my father’s familiar arms. I was scared and felt bad and was probably crying, which didn’t help the fact that my chest had tightened and I could hardly breathe. My parents were alarmed and we left for home.

I recovered from that bout, but once started, the episodes became more frequent, until I was a full-blown asthmatic. It seemed after that first time, I became short of breath while doing things I had previously done with no problem. I couldn’t run or ride a bike or jump in leaves.

They took me to many doctors, the family physician, the allergist, even a chiropractor at one point, although to this day I’m not sure why that would ever have worked. Someone probably suggested it, and my parents tried everything.

Eventually, a round of allergy shots was suggested. I had bad reactions to the injections and twice ended up in an ambulance on my way to the hospital for a dose of adrenaline. And while I was a bit of a drama queen and enjoyed the attention that being rushed to the hospital in an ambulance afforded me, it was stressful for my family.

What can we do? My parents asked. You might consider a different climate, warm, and dry, without the dampness and the pollen, the doctor said. Mom and Dad thought about it, and discussed it. They also talked to other people who knew this person and that person who had moved to Phoenix, Arizona and it was a miracle, the people said, because the asthma was gone once they got there.

My parents made their decision and sold the house and most of the furniture. Dad hitched up a U-Haul trailer to the old Mercury and we set out for Phoenix. It was exciting for my brother and me, an adventure. We’d never stayed in a motel before, we were moving to a big city, and we would be the “new kids”. We were thrilled, with the mystery of what would happen next.

What happened next wasn’t good. We rented an apartment in a complex of eight, four on each side, which looked like Army barracks, built with concrete blocks, with cement floors painted brown. There was an eat-in kitchen, a living room, two bedrooms and a basic bathroom. It was a dreary place and Mom felt we needed to have modern light-colored furniture now that we were living in the Southwest, so we bought tables and chairs in a color called “blonde”. It seemed ugly to me, uncomfortable and temporary.  

The living conditions were less than perfect, but worse than that, I was allergic to Bermuda grass which was grown in Phoenix because it could withstand the dry climate. I wheezed in Arizona as much as I had in Western New York. It became clear, it wasn’t going to work. We had sold our belongings and moved to a strange city where we didn’t know anyone only to find that I wouldn’t be any better there than I had been “back home”, as we now called it.

It will get better, Dad said. It will get better. 

The refrigerator had a short in it, and could give you an electric shock when you touched the metal handle. It was a random occurrence, but we were always afraid of it. One day my mother had her hands in dishwater and turned around and grabbed the handle and got a shock that literally froze her where she was, unable to move. I pushed her hand away to free her and got a shock too. It was just about the last, worst thing.

That day, the day my mother had nearly been electrocuted, my father cried. I will never forget that day. He came in from work, and she was in tears and I was sick with wheezing. He wept. I had never seen it before and realized he felt deep disappointment, and regret, and fear that there wouldn’t be anything that could help me. And utter sadness that it had been a mistake and it wasn’t going to “get better”.

That was the day I first knew about love. I looked at my father, my strong, invincible father, as he sobbed at the kitchen table, and I felt such an overwhelming love for him, my Daddy, that my throat tightened, and I couldn’t talk about it, and I couldn’t feel anything but that, and I knew I’d do anything to make his tears go away. If only I could not be sick anymore, that would make him feel better.

We went back home. We’d only lived in Phoenix one month. My parents looked at it as a learning experience. That if they hadn’t tried it, they would have never known for sure, and would have always wondered, what if? We muddled through those years when I was a wheezy kid, then adolescent, and I stayed away from dogs and cats, and dust and pollen, and hay and strawberry farms. Until, when I was a teenager, the asthma nearly disappeared. I was one of the lucky ones who “grew out of it”.

I never really appreciated my parents when I was young, as many children don’t. I didn’t know anything else. I didn’t know there were families who fought, who abused each other, who didn’t support one another. My father was always the strong one, the funny one, my tall, good looking Daddy. He became successful in his life, and he was always a faithful husband and the best father any child could ever hope to have. He was a perfect father. There was nothing he did wrong, not once. But I didn’t think about how much I loved him until that day, when he needed to be loved, when he couldn’t be strong for us any longer, and became vulnerable and defeated and lost.

He taught me to tie my shoes, and now I help him tie his. My father has Alzheimer’s, and is in the mid-stage now, that dreadful time between knowing and not knowing. He is afraid, and confused, and I would give anything if he did not have to go through this.

I think about that day, when he cried, nearly every day now. He’s probably forgotten it, but I never will. The day I learned what love was really all about. When someone else became more important than myself. When his needs trumped mine. When I thought, I really love this person, my father.

Every child should have such a father.

 

B. B. “Clink” Voorhees (May 31, 1922 – April 15, 2012)