A fellow church member once put her hands around my shoulders and said, “I don’t know exactly what you are going through, but I have experienced pain, disappointment, hurt, and anger, so I think I know how you feel.” I think she is the same woman who asked me while I sobbed, “How can I pray for you?” It was just what I needed at just the right time. She was sincere, as she looked me in the eye and into my heart.
Rarely does anyone ask any more. I can only imagine what people think when they see me because they worry about how I’ll answer, and how they would have to respond. The fact is, that it isn’t going to get any better than it is right now. It is the elephant in the room.
We have been through a lot, he and I. In fact, he started falling apart in 2009 when he went through what I refer to as a “Mid- Life Temper Tantrum”. So, although he has only been diagnosed for 3 years, we can see where he started to come unraveled. However, I’m determined to focus on the present, enjoying each and every moment while I still can. It takes will power because it is so easy to look back. It is way too easy to get mad, to point fingers, and blame others. But I do it, because it is right, and I need to be a good role model to my children who watch my every flinch. They need to move forward. Therefore, I do too.
Mostly, he is doing well. The average person would not notice unless they spent quite a bit of time with him. As with any mental illness, it isn’t visible. He is in good physical shape and he looks great. I often use the light bulb illustration. You know what it is like when the light bulb is flickering and needs to be changed soon? It’s like that. You never really know when it is going to flicker. You just know that it will. You don’t know when or for how long. It’s like that. When he flickers, he looks lost. Sometimes he stops mid sentence and stares. He isn’t with us. When I ask him where he’s been, he doesn’t know. My daughter read a book called Men Are Like Waffles-Women Are Like Spaghetti. In it, they talk about how men categorize things in their life like squares in a waffle. For women, all categories intertwine like spaghetti. In the book it talked about how men have the “nothing square”. When men are in their nothing square, they are truly thinking about NOTHING. Well, when my husband is flickering, as you will, he is in his nothing square. He doesn’t do it all the time, but he does it a couple times a day.
One day I was sure that he had a seizure. In church, he just stopped singing and stared at the corner of the sanctuary for a solid minute and a half. I couldn’t get his attention. When it was over, I could hardly breathe. My nerves were on the edge of my skin and my hair stood up on my arm. It scared me. The doctor didn’t seem surprised and said that an EEG would tell us if there had been seizure activity.
I am proud to say that we are down to 14 pills a day and those are all the necessary ones. He receives Botox Injections every 3-months for Chronic Migraines, that we are assured DO NOT go with either the Frontotemporal Dementia or Chronic Traumatic Encephalopathy (CTE), which is dementia caused from traumatic brain injury. Doctors still think that he has FTD, most likely sped up by CTE and is Semantic Type. This affects his speech and explains why he uses the wrong words sometimes, why he has trouble with word retrieval, and why he just gives up. Short term memory issues + word retrieval issues= frustrated husband. As a result, there has been no more blogging and very little status updates on his favorite Facebook sites.
One of the biggest frustrations of dementia is that it is a bit of a guessing game. Doctors do clinical evaluations with both the patient and the patient’s family along with MRI’s to make the best guess they can. It is frustrating. At this point, my husband has decided that he doesn’t want any more cognitive testing, MRI’s, or EEG’s to measure seizure activity. As a result, he has agreed to no more driving. This has been difficult for him. He has always enjoyed driving. Once in a while, I let him drive while I sit in the passenger seat. After a short distance, he asks to trade places. Driving is not enjoyable for him any more. He clings to the steering wheel, and stares straight ahead, determined to prove to himself and to me that he is still capable if he needed to drive in an emergency.
He is quirky, but he’s always been quirky. It is just a little more so now. Sometimes he gets moody, and sometimes he uses bad judgment, so I have to keep an eye on him. His ability to reason has got worse, he feels frustrated, and he doesn’t always know why. It is important that he feel independent while friends and family watch over him from afar in order to be sure that he stays safe. He is insistent that he does not need “a babysitter” and that he “likes being alone”. He doesn’t need someone around him during the day, he just needs be checked in on every 3-4 hours. It’s particularly difficult when he looks fine so we have to remind ourselves that he is more lost than he looks.
He does his best when people around him are positive because he doesn’t know how to process high level emotions. Drama and excitement are too much stimulation. It either freaks him out or sends him to his “nothing waffle square”. As a result, we have found that we need to stay as upbeat as we can in front of him in order to keep him quiet. That’s why noisy, loud, busy places make him frustrated. In fact, sometimes it makes him yell out inappropriately. We have to remind ourselves that when he acts this way, it is the disease, not him.
Overall, he is fairly easy to manage about 9/10 of the time. When we go long distances, I pack as I would if we were taking a child: iPad, word search, snacks, drink, ear phones, movies… Two to three hours away from home are plenty. Then he starts asking to go home. Home is safe for him and he prefers to be there.
He complains about being tired and naps nearly every day. He says that he doesn’t sleep well at night, but he lies still, so I am not sure. He does pretty much what he wants every day. He gets up when he feels like it, naps, eats, scratches the dog, watches crime TV, and plays solitaire on his iPad over and over all day long.
His OCD tendencies have really kicked in, but I don’t mind. The house is very clean, dishes are done, laundry is folded, and he takes his house cleaning duties very seriously. He carries wood and keeps the fireplace going nearly every day.
He is getting along a whole lot better with the dog and the cat. In fact, he treats the dog like a child, and seems to really enjoy her company. It’s amazing what a low dose of Zoloft can do.
The weather is getting better and he is looking forward to getting outside. He loves to mow the lawn and work in the gardens and is already planning them. I am so glad that he has had that opportunity. The house on the hill was his dream and I am glad that he has been given the opportunity to enjoy it. I will most likely sell the house AFTER. I don’t know where I’ll go, but I do know that I cannot keep up with it alone and I think it would be just too painful. I have such mixed feelings, because it is where we have a lot of great memories, and it is a beautiful spot, but I just don’t think I can do it. It will be too much.
We picked up enough Life Insurance to bury him, so long as he lives a year and a half. That was the last death related thing on the to-do list. We have done all the paperwork with the Eldercare Lawyers, the stone is in place, and now the funeral will be paid for. I just pray that when the time comes, that it is fast, painless, and that he doesn’t need to go into a facility. I pray that it doesn’t progress to the point of him losing control of his bowels, his speech, and recognition of those he loves the most. I don’t want that for him, or the kids and I.
We often play a game. One says, “I love you.” The other says, “What do you love about me?” Most of the time, the answer is, “I love being with you.” That is what I will miss most. Just being with him. I pray that we have a whole lot more time.