In life being prepared is essential, but when care-giving for a person with dementia it is do or fail. If he is hungry, for example, it is difficult to keep him from getting overly agitated if you have to start on the fly. Preparing came natural to me but after living with dementia and the crazy turns it could present made planning go to a new level, especially when you add young children. I first began by always preparing a weeks worth of medication/vitamins for my father on Sunday and soon graduated to preparing a month in advance (two months to cover summer). Meals would always have to be ready to go, so weekends become cook for the week. As time would go on my fathers meals would become more difficult so meals had to be specific for his diet; low fat, low carbs and easy to chew. Having a food-saver is a must and has allowed us to prepare meals so during the week it is grab and heat up. As you can imagine, with running kids to after school activities during the week can become quite hectic so it is prepare or go crazy trying to do it on the fly.
During our first few years my father was very eager to pitch in around the house. This kept him engaged and gave him a feeling of worth. The key was to find tasks that he would be capable of handling. We would leave dishes in the sink, even though we had a dishwasher, leave baskets of clean laundry to fold and when he would wander upon them he would jump into the task. For almost 7 years this system worked until he started slipping into different stages of dementia. The first sign that he was starting to slip would be when one day he was out raking leaves during the fall, a chore he had happily done for years, when he stormed into the house yelling at me that he did not come here to work. I couldn’t help but laugh, which got him frustrated even more. I was able to redirect his anger and after explaining was not visiting but in fact has lived with us for many years we were both able to laugh. We began then to approach tasks for him much differently, shorter and monitored activities were now all he could handle. Any amount of time alone sent the mind spinning off.
After learning that reasoning with my father was pretty futile, he would argue the most simple requests, change clothes, take a shower, etc.. My father always had a sweet tooth and I learned that if I threw a “after you take a shower dessert will be served” or “after you change I have some candy for you”. This worked like a charm. I would have stashes of sugar free ice cream or candy ready to go. Most of the time he would forget that I had said that after he had done the task. It also came in very handy if he was getting agitated with the children playing or if he was caught in a question loop. Having a distraction ready to go for him is essential in dealing with those moments. He could be extremely upset that the baby was listening to his instruction, within five minutes of me distracting him with a treat he would forget what he was frustrated with. The only problem was that I had to then deal with little kids saying “what about me”. Not wanting them to learn that negative behavior was rewarded with candy was a bit difficult but we were very consistent with explaining that their Papa sometimes gets confused and that the candy helps. Raising kids in the house has been a bit challenging. My father is very found of children but is more like an older sibling that a grandfather. They have grown to understand and are our little helpers and as they have grown older and he has slipped more they have been able to assist even beter.
“Fight one more round. When your feet are so tired that you have to shuffle back to the center of the ring, fight one more round. When your arms are so tired that you can hardly lift your hands to come on guard, fight one more round. When your nose is bleeding and your eyes are black and you are so tired that you wish that your opponent would crack you one on the jaw and put you to sleep, fight one more round — remembering that the man who always fights one more round is never whipped.” Gentleman Jim-James J. Corbett
Now the circumstances that make our situation unique is the age my father became disabled, 62 years old. When we began our care-giving of my father we had one child, a 2 year old daughter. Two years later we added another daughter and six years later our third daughter. When explaining my situation with my father to people I often get a how can you do that with children. Juggling little kids, my father and our jobs, which are both an hour from our home, is most challenging and quite frankly a bit crazy, but I know of no other way. As I stated in the MY Dad page, he dealt with a lot during his life and I can not imagine any other way because of his example. No matter how hard or crazy his life got he was always there and always took care of his family. I can not envision him being in a home and I want to show my daughters, by example like my father did, that you take care of your family. I know that the day may come when I can do no more for him and it becomes necessary for all that the next step be taken, but until then we will fight one more round.
It was clear that being home alone all day while we were at work was not the best thing for him. He would not be able to regulate his own diet and lack of human interaction, we felt, was the worse thing for him. I would come home and he would be confused and not his happy go lucky self. Not knowing what was available I went to the town Department of Aging. This was the best move yet. The help and guidance they provided would be invaluable. Since he was still very sociable we found a Senior Center in a nearby town that would feed him lunch for a small fee. We also found that the state would provide transport to and from. Perfect! Now to get him into a routine. We had to make signs that would tell him what was gong on and when to expect bus. The bus would pick him up and drop him off about an hour before I would get home. The first few years everything went smoothly. We would visit the center a few times a year and meet the people he was with during the day. As is the norm, most would be ladies in there eighties, who would look after my father, who was still relatively young for such a place at only 64. He would be his funny social self, asking the same questions everyday or saying the same funny quip with them. After a few years the routine would become so ingrain in him that when we would be on vacation during the year or away at our summer home in Maine he would be always be looking to get on a bus. We would be in the middle of the woods and he would be looking to wait for a bus. This is when he started to get a bit more aggressive and delusional. He would not let it go. We had to put signs up to try and shortcut him looking for a bus and sometimes he refused to believe there was no bus. We found that the best way to deal with this would be to quickly try and get him onto other things, let’s go for a walk, play cards, go outside watch grand-kids, play with the dog. This would be the best way to deal with many of his quirks, just needed to get him on another track. It does require pre-planning and quick thinking but is the best tact when dealing with this type of behavior.
During the first year the first thing that we had to address was the asking of same questions over and over. Patience could go so far and it would sometimes overcome us. We started writing out answers on a piece of paper. He would ask we would say just read the paper. We next purchased a laminator so we could put signs up with the answers of his most asked questions. This also helped greatly with times he was alone. We would strategically place them around the house. Put one by the front window with times we would be back from work, our phone numbers by the phone, the dogs feeding schedule by the dogs bowl, a hand drawn map of the neighborhood, one in the bathroom about where he was living etc… Again, he was still pretty good socially at this point and would be happy staying home with the dog relaxing. I would come home answer the same questions about what I did for a living and where I worked. I was determined to get him into shape so I would even send him to the store for something almost everyday with a simple map to and from. He would be more than happy to help rake leaves, mow lawn or shovel snow and after the first year his weight and diabetes were in check. For years our house and car were full of laminated signs and as time would pass we had to make bigger signs until it got to the point where stopping and looking at signs, no matter how big they were, no longer registered with him anymore.
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.