He is eighty-four years old. He does not know that. He can however tell you when he was born. He is not sure how many children he has but almost every young female he sees is thought to be a grand daughter. He doesn’t care a whole lot about the men but loves the ladies. When he is asked a question he will try very hard to bluff you out and trick you into giving him the answer. He shows you a woman’s picture from his billfold and identifies her by name as his wife, saying, “Do you remember her?” The picture is of my mother. The man is named Robert. Some call him Bob. I call him Dad. He has Alzheimer’s disease and the condition is irreversible.

“He’s the man in the mirror. He can’t see it that way
He’s seeing a stranger, greeting himself today
He says, “Go ahead. I’ll wait” and he means every word
He’s being polite, using manners he’s heard”

LOST IN PARADISE

He has lived in the house for four years but still must be told where he can go lay down for a while or where is the bathroom. This happens often and it happens often every day. He has to have someone in the room when he bathes. He forgets if he was getting out or getting in. A routine is established and always adhered too in efforts to help him remember. It doesn’t work. “Take your clothes off now. Get inside the shower and get wet. Take the soap. Wash here….wash there. Rinse off. Here, put some of this shampoo on your hair and rub it in. Rinse it off” Simple but easily to forget when ones mind is daily fading away to a near nothingness. Sometimes it makes one smile as he asks for clothes to put on in the shower while the water yet runs. He feels he must become presentable.

When he passes by the mirror in the bathroom, he stops and carries on a brief but polite conversation with the strange face that is in reality his own. He can still clean his teeth and shave if everything is laid out and explained. While doing that the face in the mirror is once more his own. His eyes are tired and shadowed with concern. He fidgets over the different tasks, unsure what to do next.

Family members or other caregivers carry a deep aching for his frustrations and for their own. It is not unlike ‘mortar’ shoring up and insulating a building of some sort. The building is instead what once was the proudly housed body of a fully functional human being. The mortar is decaying and the human house has begun to crumble. Someday it will fall and be a house no more.

“He’s not drunk or stupid. He’s just lost his mind
He’s a victim of Alzheimer’s and its not very kind
He’s somebody’s brother, father or son
He led a good life. His best was done”

AIRPORTS MEAN GOOD-BY

I am on the phone with my out of state daughter. She is in tears. For almost four years and by choice, she and her family have shared their home with her grandpa. Now she is working full time and they have two children eight and ten. The caretaker who made life just a bit more bearable can no longer do so. Her families mental and physical being have become worn-down with his many needs. My dad’s mental behavior has badly deteriorated. He is in desperate need of a skilled nursing home. She loves him with all her heart but is now overwhelmed and knows she must give up his care.

I notify my employers that I will have to take a leave for two weeks. I begin rearranging life for my own family, my dad and myself. Three days later I am in Colorado. Only a few days there and he and I will return home to California. It is wonderful to see my daughter and all the family. It is sadness beyond description to see the change in this man who is my Dad. Now I am one moment a stranger and the next his wife, daughter, granddaughter or a kind face. I am anyone he chooses to make me. No amount of orientation helps. Whatever is said to him is forgotten within two to five minutes. All I can do within this home to help is to be kind and be there for all of them. I see an Attorney and become the ‘Power Of Attorney’ for my Dad. We have a final check up with his doctor. I pack his belongings. They fit in two cardboard boxes and a small suitcase. I think to myself of the sadness of being eighty-four years old and having your life’s belongings left to you amounting to so little.

Six days have passed. Dad and I will be boarding the plane soon. Six of us huddle near to say our good-bys. All but one has trouble making their tears stop flowing. My son in law hugs him and steps aside and back, his face working at calmness, keeping his feelings back, being stoic or strong for his family. My Dad remains dry-eyed and unconcerned. He seems to have no comprehension of what all the commotion is about.

The Grand children hug their Great Grandfather extra long and extra tight. They know they will probably never see him again. When they return one will look into a sack of left over donation clothing dad once owned and burst into tears while retreating into the rocking chair he used. The child stays in it for a long time. But now we are in the airport and it is time to walk the ramp and find our seats. I take his hand and lead the way.

Between planes the terminals are very busy. Dad finds their elevators tolerable, the escalators usage is not even an option for him and the ‘moving sidewalks little more than an agitation. He becomes very anxious. He wonders “Where is my wife?” He thinks he saw her only moments ago. She died four years earlier.

The entire time since our departure has been like holding the hand of a small dependent child. Finally we have only one more flight and the trip will be over. We are in San Francisco. We hurry to the loading gate. I am eager to board that plane. I want so badly to be home.

Weather problems have caused the flight to become canceled. They tell us we must see about retrieving our luggage or arranging its overnight storage. We are rescheduled to fly out the next morning. We must provide our own sleeping arrangements and return to the airport on our own the next day.

All day long I have arranged wheelchair transports for my Dad. His old legs don’t move as far or fast these days. We’ve come a long way and grabbed something to eat when and where we could. Dozens of trips were made to the ‘men’s room’ (sometimes three times in an hour) for my Dad has a physical problem which makes him feel the need to use that facility often. I stand outside the entrance and wait for some stranger I can stop to go inside there and say “Bob, where ever you are, your daughter is waiting outside for you” He has problems finding his way out of a room with more than one door. Sometimes he opens several stall doors trying to find the door leading out.

All day I have had to remind him who I was and where all those people with suitcases came from plus what felt like a thousand other things. Reassure~reassure~reassure!

Now there were these new problems. I was so confused in my own mind and frustrated at this point, I could not recall how to locate our luggage in this huge facility. There were strangers everywhere. An employee at an ‘information counter’ offered next to no help at all when I tried to explain my situation and need to get someone to help me just a little. I leaned against a corner wall in my weariness trying to focus on the next step I must make. It is all too difficult. A kind lady comes to me and smiles saying “You didn’t get much help, did you? May I help?” That’s when the tears began.

I had never felt so alone and helpless in my entire life. I felt so grateful that somebody cared and took the time to see what could be done. She reassured me then pointed me in the right direction to arrange about our luggage and phones where I could make motel arrangements. I regained my composure and completed the necessary arrangements. It is ten p.m. as I finally drift off to sleep. My Dad will wake me up at least fifteen times during the night. He is up at the sink wondering what the faucet handle is and why he can’t remove it. “What is wrong with his bed covers? Why is his bed so large? Where is the bathroom?” A few times I wake to find him sitting up in his separate bed picking at the coverings. Earlier he turned down both sides of his bed as if thinking of me as his wife. Finally daylight is here. A ‘Hotel Shuttle’ takes us to the airport and we board our flight. Thank you God. There is no place like home!

“Somewhere in his race to get through each day
Alzheimer’s took over and this man lost his way
Everyday mind signals whether large or small
Have been over ruled by the loss of it all”

TO HECK WITH THE PROBLEMS….
FULL SPEED AHEAD

Home, Day one:

The plane has landed. My husband is there. I feel like a huge weight has been lifted off my shoulders. During the trip I had so often thought “What will happen to my dad if something should happen to me?” Now I would not be alone. My daughter had managed to save twelve hundred dollars from her grand fathers Social Security checking account and given it to me. I had spent nine hundred dollars to get there plus the return back home. The motel bill was eighty-five dollars and the new doctor I’d found for him would charge one hundred and forty for a new patient physical. After that came applying for a Medi-Cal card so a nursing home would accept him. We had a minimum wait for one week at the only one in our small town. The doctor ordered medicine that cost ninety dollars. His life insurance was almost thirty dollars a month. When he went into the nursing home without a Medic-Cal card, it would be a minimum eighty-two dollars a day so with ten days to the remaining month, that alone was eight hundred and twenty dollars. What a glory to become old and have your material life amounting to your family’s love, two cardboard boxes and a small suitcase.

Day two:

Dad is in our home for now. He came into our room and rearranged a few things in his confusion. He left his shoes in his room so came to get my husbands. (Good thing they fit) He got up at six a.m. the last time (after several times in the night) and needed to be showered. Once he said he was up looking for his ‘paints’ and patting on his thighs. We didn’t understand what he meant but suggested maybe he wanted to use the bathroom which he did. I have been back and forth so much to social services and filled out paperwork over and over. My husband and I are so frustrated. Sometimes he naps for an hour in the day then gets up and thinks he is on the farm he grew up on, and that a river runs between our house on the one side of the road, and the neighbors on the other. He keeps wanting to find the outhouse not knowing we are in a modern city. At night he thinks it is morning and at morning he thinks it is night. At last he is sleeping. We hope he will have a restful night. We hope we will also have a restful night.

Day three:

Dad has been in our room again and urinated in the doorway there and again in the entrance to our bathroom before we fully woke up and pointed out that he was in the wrong room. Sometimes things like this happen on an hourly basis for one reason or another. He forgets to wash his hands. He isn’t careful using the bathroom and there are other habits pretty distasteful. He doesn’t mean to be this way. He is very mannerly in his dealings with everyone. He doesn’t know he smells bad and has no wish to offend anyone. This Alzheimer’s is a crying affair even though sometimes without the tears.

“His mind simply forgets. He just does not know
He doesn’t want to offend you, Or bad manners show”

IF THIS PLAY ABOUT LIFE IS SO FUNNY
WHY ISN’T ANYBODY LAUGHING?

Day four:

He has been up nine times since three o’clock this morning. We all got up at last at 7:30. Dad doesn’t have a clue from one time to the next where anything is. It is so sad to see this happening to a parent. We now have to stand with him at a sink and get him to follow our example of washing his hands with soap. He either calls me by no name or by one of my daughter’s names. Sometimes he gets my husbands name right but it is indeed a rare thing. He stares at the television a lot. I thought he had some understanding of its images and words but it turned out he was under the impression that everything he saw and heard was serious. I finally gave up trying to explain. Our home has taken on the odor of a poorly kept nursing home.

I took him for a walk today but after two blocks he complained his legs hurt too much. He took two naps and managed to stay up until nine p.m. He didn’t want to ‘put us out’ to find him a bed somewhere so he offered to sleep on the couch. (His temporary bedroom has two twin beds)

Between my father's behavior and all the paper work I must complete on his behalf I feel like breaking again into tears. What do people expect in times like this? It seems like one pain is gotten over with when another comes to take its place. Some things he does are comical so how come no one is laughing. It is back to work for me tomorrow. My husband will have to cope without me. God help him. It will be a very tough job! If my dad gets the Medi-Cal card and along with his meager pension (a whopping hundred and forty four dollars) and small social security payment, it will leave him with thirty-five dollars left over each month out of which comes a twenty-eight dollar life insurance policy he and my mother paid on for years. A grand total will be left over of seven dollars he can spend on any luxury he wants. Wow! Isn’t that terrific?

“Maybe we don’t understand - But we all need to try
To not just give up - Or stand round and cry”

ROSES ARE RED AND VIOLETS ARE BLUE
TELL ME WHAT I NEXT SHOULD DO

Day five:

Every flat light colored surface on the television is thought to be snow. This worries my dad for he is concerned about the warmth of the people on the screen. He stares once more with no acknowledgement of the fictional reality playing out before him. When I returned from work he acted happy to see me then forgot I ever left. He feeds himself and does well most of the time. He still gets up often and always thinks he had a good nights rest whatever time it happens to be. He is ‘eternally grateful’ for anything done for him. All activities of daily living like soaking his dentures, washing hands and so forth are demonstrated and supervised. Each day something is worse with the memory then the day before. He knows what the weather outside is like when he sees it but forgets right away. When I came home from work one day and asked what he had done to entertain himself, he replied “I worked outside a little”. The true facts were that we had had a raging wind-driven storm all day long. Sometimes he reacts to the fact that something is wrong but what that something is remains completely lost to him. He would wear his clothes twenty-four hours a day and seven days a week if no one changed him. He doesn’t even know his teeth are not in his mouth until he tries eating without them. Hand washing and hygiene are not automatic. It hurts so bad to see the daily downhill turn this once proud man has taken. The emotional impact on the family is beyond description. If you take away at least ninety five percent of what one takes for granted in one waking day, you might have some idea of what it is like with Alzheimer’s

“Somewhere in a garden God has planted on earth
Grows a weed that is medicine Just waiting for birth”

WHERE DO I SLEEP HONEY?

Day nine:

Dad seems to be the same. However just after midnight he dressed and went outside then came back inside and laid down on the couch. I heard the doorbell as it woke me up from sleep. I wondered who in the world would be at our door that time of night. Not hearing a repeat ring I got up to check in case something was wrong. Passing my dad’s room I saw he was not there. I went into the dark living room but didn’t see right away his same color clothing as he lay with his face against the couch back. I looked outside and saw nothing more then homes and rain washed streets. I yelled to my husband “Dad’s gone!” In turning around, my eyes now adjusted to the dark I saw him on the couch. Apparently he went outside to the porch, then rang to gain entrance to the home, finding the door he’d opened unlocked, he then came right back into the house and put himself to bed.

At last my dad is approved for medi-cal and an opening is available but the nursing director is afraid that with his Alzheimer’s he might hurt someone by getting violent. Our only other alternative is a twisted road of two hours driving time or we could try a home another ten hours further down the road near a different daughter. I told the nursing director he would only kill someone with his kindness. She agreed to meet him. Once there he flirted with every women he met and was polite to all the guys. They agree to admit him in two days or the upcoming Monday. My husband rarely has gotten over three hours sleep a night so I could rest for the workday ahead. He is on the brink of exhaustion. His family has serious cardiac health problems and his dad faces a repeat open-heart surgery in less then one week. It is now a question as to who will ‘fold up first’. I’m worried about everyone. There is no guarantee to life but then who ever said living it was easy.

I pray that a cure is there for others. Alzheimer’s shows no mercy to anyone. If the family suffers, what is it like for the victim? Does their loss of memories make the illness easier for them? How can one know what lives in the mind of another, no matter their external behavior? They are lost in an eternal mind fog and eventually forget how to walk, feed themselves, et… We wonder what the next week will bring. It will be such a difficult thing to do putting dad in a nursing home. We know it must be done. My tears don’t show but they are there. Tomorrow is Sunday. What will be there in that day? Will my dad have any quality of life? We will see.

“Some smart soul will find it - I pray that it’s soon
He’ll have given some families - The sun and the moon”

I CAN’T GET MY WATCH ON

Today we took a thirty-minute ride ending up at a large department store. We bought dad a watch and electric shaver. He had gotten careless with his regular razor, cutting himself twice already. I put the watch on for him before starting home. We hadn’t been on the road more than five minutes when we heard him say “I can’t get my watch on!” He had removed his eyeglasses and was trying to bend them over the area of his wrist where his new watch was. He was very serious in saying “I just can’t get this darn watch to fit right!” My husband said “Those are your glasses and not your watch. Look! You already have your watch on.” My dad got a real puzzled look on his face before saying “That’s right. They are. What is the world is the matter with me anyway?”

Later that day I had been looking for an ink pen. Dad kept trying to hand me his family Bible thinking it would solve my search. Earlier he had thought the Bible was his hat. He caught himself putting it on his head, then laughing sheepishly about the whole thing. He has a love affair going with hats and caps. At one time four hats sat beside his place on the couch.

He acts frightened of his new electric razor when I tried to get him to use it. He looks and acts very tired. Sometimes he gets a blank look on his face and it is almost like he is turning into a shriveled up little old man. He is wanting to go to sleep. It is only seven at night. He is afraid to tell us this because he feels bad about leaving us up by ourselves.

Part of today he seemed exhilarated and talkative. He raved about what a beautiful place we all lived in but called it by the name of the city where he’d raised his family.

Going anywhere confuses him. He tries hard to cover the confusion up. Tonight my husband and I watched a television special called “Alzheimer’s. The long good-by” I got a lump in my throat that felt like a goose Egg. I have marked the clothes we will start him out with at the nursing home. I can’t begin to imagine how tomorrow will be. I wish I had other options. Right now there seem to be none at all. It is so hard to know what the right thing is to do. I’m packing a king-size guilt trip on my back and I think it is held in place with ‘Super glue’. I am trying to harden my heart against tomorrow. It sure isn’t working very well

LIFE IS DIFFERENT BUT DIFFICULT

I just came back from visiting Dad. Thanksgiving will be the next day. I asked if we could bring some Thanksgiving food in to him. We would have brought him home to eat, but it would meant another change for him and that is difficult for an Alzheimer patient’s mind to handle. I would soon find out he was upset about a cap he had mislaid. He was leaning on the medication nurse’s cart and didn’t seem to know who I was. I greeted him with “Hi Dad. How are you? Are you flirting with these ladies again?” He looked at me with one of his “Who? Me?” then said “No. I’ve been telling her the story of my life”. We went to his room and that is when I found out he had been looking everywhere for his cap. We finally found it. He was so relieved. He sits a lot of ‘store’ by that cap. Every staff person by now has surely heard about that wonderful cap and it’s being the best he ever had. He feels better now that it is back on his head. He hasn’t shaved. I’ll have to check about that. Maybe they don’t know he has to be taught and supervised in its use. His glasses are lost.

He seems to be treated fairly well by the staff. He pats his bed and says “How long will I stay in this bed?” The activities lady talked to me later about how he set the ‘entrance/exit bells’ off. He had tried to leave and having an alarm ankle bracelet confused patient’s wear, the alarm sounded. She said he knew something was wrong for he was pushing at the code buttons trying to stop the bells. My dad flirts with her and loves her outgoing caring manner.

The staff has lots of planned activities going on. Tonight is movie night but dad didn’t want to go so we walked around in the hallways. Tomorrow we will bring his Thanksgiving meal. He is five foot eight inches tall and weighs 134 pounds. His walk is almost like a shuffle at times.

”He loses his cap. He is distraught with fear
Something quite bad is happening here
He searches his room, looks under the bed
He needs for that hat to sit up on his head”

It is Thanksgiving. His Colorado grand daughter has called. She is worried about how he is doing. We talk a long time. She feels guilty about losing control of her grand father and reassures us of her love for him. I try to make her feel better as well as I can. Life goes on for all. It still is a difficult time for all concerned.

“He is bored one can see as he goes here and there
Not sure where he is and does anyone care?
This Alzheimer’s thing tries the patience of all
It reduces a proud stance to one humbled and small”

Christmas has come and gone. I was allowed to bring my dad home for a few hours. He thought I was a grand daughter and told me what a wonderful cook I was. He had watched my husband cook the entire meal. He opened the twin-layered doors to our linen closet thinking they would show him the way to the bathroom. A lump is in my throat. It is now the new year. I visit often but very little changes and certainly nothing improves. Sometimes he thinks I am his wife. In my absence he asks the nurses which room she is in.

One day as I was leaving after a visit I heard running steps behind me. There was my dad with a big smile on his face. I said “Dad, I have to leave now. Did you need something?” He replied “I was just catching up with you so I didn’t get left behind.”

Like I said before “Who ever said life was easy?”

This is dedicated to those who have loved and lost, who have lost and loved. This is for those of us that ‘got left behind.’

We are the other victims of Alzheimer’s

For more of my writings on Alzheimer's, click on image to the left.

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The artwork on this page is from the gallery of noted artist Tom Sierak,
and is used with his gracious permission. Please click on his logo to visit the gallery; a most worthwhile trip. *VBS*

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