That first year was quite the eye opener. It was obvious that his memory was terrible, literally just a minute retention. What we did not realize was that common sense and self control had left the building. The first year he would stay home while we were at work. I would come home to find all the bread and milk gone. Trying to reason with him was not a good idea. I would get so frustrated, how could you eat all the bread I would yell at him, he would yell back I only ate one piece. I would try logic with him, you were the only one here and it was a full loaf this morning. Again I was not realizing that he had lost this ability and would we would both get so frustrated. So food had to be locked up. We would end up locking all cabinets, refrigerator and would buy two storage closets that would get locked up. Then the common sense issue came about big time and really put a shock to me. I would tell him to take a shower downstairs, which he would. One night I go down after he is finishing up a shower, I see that he had Pine Sole, I go what are you doing, he said he did’t have soap so he used Pine Sole. I was completely flabbergasted. How could he think that was a good idea, thank God he did’t get it into his eyes, he is like a young child, can’t be trusted to do anything unsupervised. He was a shell of his former self, his life stories lost to him, he would still be social and funny but would curse in front of my children, call me a shithead constantly, so much so that it was his way of saying he liked me. He would call people shitheads that he was familiar with so I would explain it was a term of endearment to him. By the end of that year his car keys would have to be taken away and I would look into finding a place for him to go to during the day.
To try and give him something to do other than sit around we got him an exercise bike. Not exactly how it should be used, but it is a start.
After my mothers passing, my brothers, the youngest now back in the states in the NYPD, and I tried to work out a schedule to assist my father. Trying to coordinate with them and caring for my two year old daughter would not be easy. We hired a home health aid and I, as a teacher, did have more flexibility than them so I took the lead in our efforts. Over the past years my father’s diet had become extremely unhealthy, cheeseburgers, pizza and ice cream his main meals. He was over 200lbs and along with the dementia he had high cholesterol and Type II Diabetes. Even with the aid there in the day it become clear that he either had to be put in a home or move in with me. He would go out and eat off diet, take a whole weeks medication in a single day if he found the weekly pill container. He had no clue what was going on with his health and was on auto pilot. After a family meeting it was decided he would move in with me after we found a suitable house. Four months later we moved into our current home in New Jersey and a whole new life of craziness would start. There would be frustrating times, happy times and sad times, but they were all shared times together as a family. In the beginning he was still capable of helping out, he even use to drive my wife to the train station for the first year since it was one road back and forth. Every morning asking her the same questions. Things like where do you work, how many brothers do you have, are they married, and after answering them every time the same answer within a 30 second period of time, she decided to change things up and make it interesting by using different answers for the same questions each time. So for example, are your brothers married, if she said no, he’d ask why. She’d say the first time, that they didn’t find the right woman yet, then the second time, that both were gay. That always got the most expressive responsive from him which was absolute silence. You have to learn to go with the flow because this type of repetitiveness could drive YOU crazy if you don’t.
After it was clear in the summer of 2004 that my father could not function normally, and being only 61, the process of getting him on disability had to be started. With my mother terminal with breast cancer, my middle brother starting a career and my youngest brother in the army over in Iraq this duty fell to me. I was the oldest son, the closest with my father, I did not hesitate to take charge. At 33 there was so much to learn in a short period of time. The forms for his union, the doctors visits, the Social Security forms and interview were all quite daunting to me. One particular day always jumps into my mind. I get off early from work to pick up my father to take him to a psychologist to have him tested for his disability pension. We get to the doctors Manhattan office, he takes off his jacket and to my shock and horror he has a joke T-shirt on that says “I have No Idea What is Going on”. I flip. How could he wear this to this doctor appointment? How could my mother allow him to wear this? I quickly change shirts with him. He is totally confused, I am steaming angry, not yet aware or ready for the kind of crazy behavior someone with dementia can exhibit. I look back chuckle and shake my head. Today I would have left the shirt on and pointed to it as proof of the disability.
Now so many years later I think back and realize that my father has been dealing with dementia for far longer than we ever realized. He retired from boxing in 1981 but was already in the dementia zone. Years of head trauma had caused Pugilistic Dementia, which I would find out is Frontal Lobe damage.
Common behavioral symptoms of frontal lobe dementia include: inappropriate actions, apathy, lack of inhibition or restraint, neglect of personal hygiene and care, compulsive behavior.
The stories of him not giving a s***, of being fearless, arguing with his boss at work, rudeness, were all, as you can read from above, dementia symptoms. People would just admire him and think he was crazy tough. I remember that after I got married I invited him and my mom over to our apartment for dinner. I will never forget how rude and inappropriate he was. In my mind I remember thinking what a A-hole he was being. We were so ignorant, most likely because he had dementia since he was in his late 30s. My mother would yell at him so much we grew numb to it. It would not be until she got breast cancer that we finally noticed that something was seriously wrong with him.
As stated we learn from experience. Have to have a routine and things to do. Through much trial and error we have found that organizing poker chips, rolling pennies, playing solitaire (organizing cards) or picking up pennies from the floor are things that will keep papa occupied. Unfortunately TV does not hold him for much time. Even on kid shows he tires of TV pretty quickly. Having things to do other than sleep is key to trying to keep him active.
Weekends at this time are becoming a bit trickier now that taking him out is a bit more difficult. The best thing we have done is Papa proof the house. We have regular security camera system and Dropcams. We also have connect sense door monitors that will send alerts to our phones if doors are opened, and water sensor alarm in case a plumbing issue happens in the basement for the fourth time. The Dropcams are awesome. They allow you to wireless monitor any room and they have two way sound. I can talk to him and get him calmed down or tell him I will be bring home ice cream if sits and plays cards. The funny thing about the Dropcam is he never once has asked how are you talking to me. I guess I am just another voice in his head. We can’t go to far or be out to long but these steps, and medications have helped us to not be tied down to the house.
For the second time in the last two weeks Papa has played possum, We start last Tuesday when papa decided in his head to play sick. It seems that with people who treat him nicely suffer this. With me he never tries this B.S.. I have to yell/reprimand him to get him straight. Two minutes after the aide leaves he is up and ready to go. Just another example of how this disease can never be planned out. You must be ready for the unexpected and ready to roll with it!
I will never forget the first time the doctor told me this word 10 years ago, I seriously thought he was joking with me the word sounded made up. As he explained it though it made perfect sense, Papa’s recent stories at the time always had some elements of truth, but as the doctor said, when a gap in his memory would hit him he would just fill it in with something on the fly. Even today when talking with people that do not know him his stories sound plausible. At first I would get so frustrated that he was saying things that did not happened, since I know him the best. I needed to learn to just go with it and not try and correct him, so as to not agitate him. It was so difficult for me to see that his memories were so jumbled and that they would be lost to him eventually, which is pretty much were we are now, sadly.
After many months I have finally started this blog. As of now we are dealing with my father in a very difficult stage of his dementia. He is on anti-psychotics and is easier to care for but has lost his personality. We still run into situations that could not be anticipated, like last week when he decided he didn’t want anymore more of his breakfast shake he began to pour it down the heating vent, much to the shock of Francine. Now we make sure that vent is not within reach.