A diagnosis and randomness from the soul.

Warning: this post is very long, only read it if you have lots of time.

The diagnosis has been made, based on the MRI, it is early onset Alzheimer's.  It is the diagnosis we expected but not necessarily the one we wanted to hear. We did learn that there are no tumors, masses, or no indication that Dave had any strokes. There is shrinkage of the brain which the dr. stated is common with dementia.


We have been doing our best to prepare ourselves.  We had started to make some changes but still hung on to the hope that maybe something else could be causing the dementia, something that could be fixed and even if no regaining of what was lost that maybe, just maybe there wouldn't be any progress.  The dr. questioned Dave again to test his memory. Dave still could not remember the city we live in, the address, the zip code, the phone number, or the year.  He could however remember his birthday, and that it takes 16 quarters to make 4 dollars and that we will be celebrating Christmas soon. The dr. asked how I thought Dave was doing and so I told him what I have observed...he becomes easily distracted and cannot complete a task without being prompted and cannot follow multiple step directions. We have also noticed that he has a hard time following shows or movies with a complex plot. Based on this the dr. stated that his 4 mg tab (he takes 2x per day) will be increased to 8 mg-2x per day.


Even though we expected this diagnosis it is still very hard. Since October I have been obsessed with observations, dr appts, medications and thoughts of what are we going to do, what does our future hold? It is very difficult to put a positive light on a disease that Dave knows first hand what the end result looks like. He constantly compares himself to what his parents went through. How do you convince someone that times are different, there is medication that can help slow the progress and that his basic health is much better than his dad's had been. It is so difficult because of the frustration that is experienced when the thoughts are lost and don't come back. Intellectually Dave knows that the medical field has come a long way in the treatment of Alzheimer's but emotionally all he knows is what he experienced and he is fearful. 


It is so hard. I know that I have to be the strong one, the positive one the one to keep things going, but I am giving myself permission to be the complete opposite right now.  Giving myself a day or two to say "I don't want to be the fighter, the strong one, the positive one. I don't want to be in charge." I was the one who did it all when I was a single parent and did not expect to have to do it again. It is so hard. It is a strange feeling to have Dave here yet sometimes he isn't here. It is hard to explain because sometimes he can follow a conversation with no problem but then the next minute he is totally lost and we need to explain all over again what we were discussing. I say we because this doesn't just effect me but also Gabriella. She comes home from school and usually at the dinner table goes over her day, and anyone who knows me knows how fast I can talk, well when Gabriella and I get to talking it can be pretty fast and we jump from subject to subject quickly. It had not been a problem but now we have to slow it down and repeat or later I re-explain what the conversation was all about. We do our best to make sure Dave is involved with the conversation but his mind wonders or he becomes distracted. Its like being in a race, we start at the starting line together and even run side by side for a distance then the next thing you know you are way ahead leaving the others behind.


This is one race that I did not know to train for or even how to train for it. From the time I was 3 years old my mother had multiple sclerosis and my father battled different forms of cancer. We observed my dad fight to keep my mother home with us (back then a nursing home was always recommended as the drs didn't know how to treat MS) and mom fought to keep all us kids together at home. That I guess was like training for this marathon we will be in. I remember my parents stealing away to spend special time together, making time to make memories together. I wish to do the same thing but then I wonder.....will Dave remember? What can we do that will not cause frustration for him and he not enjoy our time together.  When will we get to the point that we won't feel like each time we do something it could be the last time or how soon will he forget. Even Gabriella questions the future. She asked "I know this is way in the future but whenever I get married will he be okay to walk me down the aisle? He is my dad, he is the one I planned on walking me down the aisle. Do you think he will remember?"  What do you say? I just said truthfully "I don't know what the future will hold." Speaking of futures. I have spent so much time working on making things okay for Dave that I have all but ignored helping Gabriella prepare for her future. She only has 2 more years before she goes to college. I have not been keeping track in helping her get prepared now. She constantly receives mail from colleges trying to recruit her already and I haven't even had time to talk with her about it and how to prepare her for making a decision and making sure she is taking the right classes and doing  community service to give her a good "resume" for college apps. Two years is not far off as this year is already getting to the half way point. I was looking forward for all of us going to visit college campuses but what now?


I have been told by many people..."Live in today."  yet we need to spend the present preparing for the future. We need to spend this time while Dave still has the ability to mentally process things to make sure legally things are taken care of, make sure my name is on everything so I can be the one to make phone calls and get information from any agency we need to work with, make sure that I am the primary person on the bank account, the insurance papers etc. I don't even know where to begin and am so overwhelmed. I need to organize our files so I can easily find what I need.  We need to purge items from our home to make things simple and familiar for Dave.  We are trying to start routines that won't have to change so there won't be complications later, we have read that the earlier you can establish routines the less frustration it will cause in the future. "Living in today." is not a mantra we can afford right now. 


I have lots of people asking what do I need help with, what can they do? Well, I have been pondering this and I would like to say, "I need someone to move in. Someone else to take over running the household so I can just BE with Dave and Gabriella." I need an assistant. I need two someones on some days. One to help me organize or purge items and one to help Dave and cook for us and take care of the mundane daily items. I wouldn't need someone for very long just right now because I am having a hard time keeping up. I know that I need to get plenty of rest so I have the energy to deal with the day time things but I need a break and so I stay up late to spend time alone then I get very little sleep and don't function well the next day. It is a terrible vicious circle! I also would like someone to come and help me menu plan. So I don't have to think so much about dinner and hey can you come back and cook for me??!! Sometimes I need to be motivated. I need someone to come over and say "Hey let me be the driver today."  We are wanting to start walking around the mall but I sleep late because I stay up all night and then I walk much faster than Dave so I slow down so I won't leave him behind so I need someone who will walk slow with Dave. I don't mind walking fast alone, it would be my "me" time then maybe I won't stay up so late! I want someone to tell me what kinds of things would be helpful for Dave to do. I know he gets bored around the house but I can't think of things for him to do that won't require lots of direction or constant questions....yes that does happen and we are only in the early stages of this terrible disease.  Unfortunately the weather is getting cold and wet and soon snowy so all the outside stuff he enjoys can't be done.  Actually, it is very hard to let people know what we might need help with because this is a long term helping situation and it can get burdensome.  So I will just say pray for us. Pray for strength, and wisdom, and understanding.

Monica