Even Though it Isn't Just About Me.

Yesterday i got mad. I got mad at this disease, I got mad at my father and I just got mad in general. I was mad that this disease had taken my father from me, the man I loved, admired and laughed with my entire life. The man that i dreamed would walk me down the aisle on my wedding day, would tease my children like he had teased me, would give my husband a hard time, and would have philosophical discussions with me until he was in his 80's. This man was gone before i knew he was even slipping away. This disease had robbed me of all these future dreams and thoughts, and it made me unbearably hurt and angry.
Then for no other reason than I had no other person to aim my anger at, I got mad at my father for "cursing" our family with this disease. For making me wonder daily if the reason the doctors cannot control my seizures is because they are not seizures but small strokes. If I have been having strokes since I was in my late teens, just as my father had and just have yet to be diagnosed. I felt anger that he had "given" me and my brother the chance at this disease and taken away my choice at having my own children (i will not pass this on). I will never get to hold my own baby, see my own traits and family traits reflected in my own child, or the traits of my husband. This made me unbearably sad and angry yesterday. I wept for my father who is so confused now days, I cried for the future we have lost together, but I finally cried for myself and what this disease meant and has taken from me.

The Group Home Debate

My mother and I have been going around and around about whether or not we are ready to put my dad into a group home. How can we tell if he is ready, how can we tell if we are ready? How do we know when we have done the best for him? How do we know when it is better for him to be in the group home and not to be living with us anymore? How do we know when his care has taken over too much of our lives and it is time to progress on to the next stage of his care? How do we know this isn't going to hurt him more than it is just going to be to help us?
The woman helping us with his care, and our therapists tell us these are all common questions to ask yourself, feel guilty about and wrestle with when placing a loved one into a care facility, and to be even more comforting they tell us that no matter how posh the facility, how wonderful the care, and the people the majority of the people react horribly to being put into these places. Yay:( None of these things we found truly? helpful in making a decision.
So the question is how do you decide For us we have gone back and fourth. Having stolen conversations while my father was away at his daily care facility. Conversations wondering about how much longer we would be able to care for him without losing our minds because some days are just so hard, wondering what we would do if he took a sudden turn for the worse and we had no where to put him and neither of us could care for him, and wondering what we would do if someday his anger (from his strokes) took over and he took it out on one of us physically.
Well the answer to all of our questions came in a rather strange way. My mother has been ill since before christmas. She has been in and out of bed with first a horrible virus, then on and off migraines ever since. We couldn't figure out what was bothering her, she could never get enough sleep and was tired all the time.
Then after christmas, around the first of the year came "the call". They had a spot open at one of the group homes connected to my dad's care facility. NICE group homes. They wanted to know if we wanted the spot. Mom hesitated....then turned the spot down. She didn't think he was ready for the group home yet. Thought he was too aware of things around him. Now to be fair my dad is fairly aware of some things, but he has little to no short term memory, doesn't remember what he did for his jobs all his life, and at dinner time doesn't remember what he ate for lunch. He has trouble working the microwave, the tv remote and the vaccuum. This leaves us with only the option of watching him 24/7 so he does not harm himself, or put others in danger(i.e. trying to drive, leaving food in the oven, leaving the stove on, putting something metal in the microwave and starting a fire[he did this, we put it out]).
Ever since "the call" my mother has come to regret not putting my dad in a group home when she had the chance, she knew it was a good place, the owners were great people who care about the people they are taking care of, and he (my dad) would have known his roommates.So, now we are waiting until another slot opens up in one of their homes. Who knows how long that will be.

1 O'clock.

The other night at one o'clock in the morning my mother woke up to hear the shower running. Her first thought was that my father had an accident in the middle of the night and was washing up. So she checked the bed and it was dry. So, she went into the bathroom to ask him what he was doing, and very indignantly he replied "I'm takin a shower!!" and my mom said " It's 1 oclock in the morning!" to which he replied, "I'M TAKIN A SHOWER" so she yelled back "IT'S 1 OCLOCK IN THE MORNING!!!". He looked at her and said...."oh, well I'm already wet, i might as well finish" :) So, he finished and went back to bed.

CADASIL Movie Time (just some of the facts)

He Stole it!

Okay, so I eat a bagel every morning for breakfast. Last night I noticed that there was only one bagel left so I hid it in the back of the fridge. When you hide things in the back of the fridge my dad never finds things! He now looks into the fridge and can't see things that are right in front of him! Yet, SOMEHOW he found and ate my bagel! I was bagel-less this morning. I couldn't beleive it! I was astonished! The man never stops amazing me.

Things I Would Lock Away if I Could

If I had a huge lockbox I would lock our fridge, thermostat, my dad's pills, the front door, and the keys to the car away in it, and only my mother and I would know where the keys were kept. I know this doesnt make sense. How would I keep our front door locked up in a box. The point is that these are the things that cause us the most problems with my dad. He sneaks out of the apartment when ever he is able. He eats and sneaks food whenever my mom or I are not paying attention, and it is not just snacks he is eating either. He has started to forget when he has eaten meals. So, he will eat lunch and then an hour later he will get up and start to make himself another full meal thinking he has not eaten. Several months ago we had to take over administering his pills, he could not remember when and what to take, or if he had even taken them. So, he would end up going without or DOUBLING his dose for the day or night. This led to locking away all the pills in the house and just administering his pills as he needed them.
As for the thermostat, remember when you were little, and you came out in the wintertime to complain to you parents that you were cold? Mine always told me to "put a sweater on" well if my dad is the slightest bit uncomfortable, too cold, or too hot, he comes out and adjusts the thermostat. It doesn't matter if he is cold and only wearing a short sleeve shirt he cranks the heat up and roasts the rest of out until we realize he has changed it. So, these are some of the things in my home that I would lock away as to control some of the chaos a little.

The Hardest Part Today.

Several times over the last month my mom and I have caught my dad having problems, getting sick, or just doing something that he shouldn’t and hiding it. Let’s be honest, we expected the last circumstance, but within the last month or so he has hidden things like when he threw up when he was getting the flu, when he spilled a cup of coffee all over the floor and didn’t clean it up for hours, and when he hurt his foot in the middle of the night and bled all over the carpet and the floor and didn’t clean it up leaving a dried trail of blood across the house. My mother and I have always had to stumble across each mess later and ask him specific questions in order to figure out what has been happening to him while he has been in the bathroom, taking a “nap”, etc. While this has become and annoying side affect of his brain damage it is not unmanageable. We just become the annoying twins that ask him all the time if he has to go to the bathroom, if he feels sick, if he ate, if he took his pills (then we check because he doesn’t remember), tell him to remember his cane, to put on his coat, to take his keys with him, to take off his shoes, to take his coffee with him in the morning…


I don’t blame him for getting annoyed with us, we pester him to death just to get him out the door with all of his stuff in the morning, but I know if we don’t he won’t take his pills, won’t take the keys to the building, wear his medic alert necklace, take his book for therapy, etc. Some days when I hear him getting up to get a snack I have to get up and see what he is eating to make sure A) he can eat it, as he is allergic to milk and B) it is not something that he shouldn’t eat as it has maybe been in the fridge one or two too many days.

So...I digress. My point was, while this is annoying it is manageable right? What I fear is that one day something is going to happen to him, something like he is going to have a horrible reaction to a stroke and not tell us, he is going to hide it. Then we will have no recourse until it is too late. I walked into the bathroom the other morning and found an extremely bloody Kleenex in the waste basket. Turns out he had a bloody nose that day and hadn’t told anyone, even though he couldn’t remember how to stop it.

One day something is going to happen to him and he is not going to tell us until it is too late, I just know it.