Lets go for a skate

The last couple of days, dad is having a lot of difficulty with speech and what he calls “the clacks” (it is like when a baby blows bubbles and make the noise that goes with it). With that, comes a lot of naps because he thinks when he wakes up that it will stop. It rarely stops, but I think he feels a little better after a nap so it is a good thing. I have been encouraging him to go rollerblading a lot because I know he needs to be doing stuff, the downfall is that after he skates I have to go hunting around town for him at the three bars. I never get there quick enough to avoid the drinking that he manages to get on board but I can usually get there before he is stumbling. The craziest thing about his disease is that even as he is slurring and falling into the wall, he will look right at me and say something like ” I haven’t had any liquor Dawn Marie, why do you say that to me?” The lack of self awareness part  is pretty much complete when there is liquor doing the thinking for him. He says he has to have a drink sometimes because it makes him feel like he’s normal. Well, he is 68 years old and I only have so much to say about what he does. As long as he isn’t getting in trouble, or hurt, I can put up with it. I have no idea what he will do this winter to burn off his energy and anxiety. So now I am going to do my daily walk around with a garbage bag to pick up cig butts, beer bottles, and garbage that seems to magically appear in the yard and the woods.  

I saw a glimpse

So tonight Dad and I drove to Duluth. I have not seen my son for a week and a half and he came home from vacation with his grandparents tonight, I was putting my things in the truck to leave and cried a little when my husband gave me a hug goodbye….I would have liked to have seen him and heard about his trip, give him a hug before I left but the day had already drug out with Dad telling me several times that he has nothing to “do-it” here. It was already 8pm and it takes three hours to get to Dads house, so it was time to hit the road. Dad asked me what was I crying about, I told him that I just miss Adam. He said we should stay til tomorrow…the most unselfish thing he has said in two years…that all by itself almost made me cry again. I reassured him that it was ok and I would just pretend that the vacation lasted til Saturday for Adam. He said he feels really bad about me not seeing him, honestly, I am still in shock! Dad will be picked up for hockey in the morning and somehow everything will be ok for another day…..God willing.

How do you tell someone they are losing their mind?

The last couple of days have been up, and then down. Pops wants to help with stuff around here so I suggest a couple of small things. He gets a start at them, but always stops before he is finished. His lifelong work ethic was unbelievable prior to this. One thing he has done a lot of lately is wearing heavy clothes outside all day in 85 degree heat with high humididty, and a baseball hat. When I suggest taking off the sweatshirt I get “I like my clothes-it”. He has overheated several times and refuses to shed clothing. Add to that his almost absolute refusal to drink anything but coffee or NA beer and its not a good thing. He becomes more confused and I can not reason with him. Yesterday was a pretty good day for him I think. We got some chores done, grilled steak for supper, and after I convinced him to take a shower he got in the hottub for a while. This morning he guzzled three cups of coffee (that he thinks is caffeinated), and at 0830 he went for a NA beer. Its not worth the discussion to suggest anything else, he just goes outside and dumps it out anyway.

We are headed up north tonight so he can play hockey tomorrow and friday. There is a wedding on Saturday that he wants to go to.  I was hoping to get home Friday night, but my brother has to work Saturday and with no one willing to have him for the weekend, it looks like I will have to stay up there. My son is coming home from a week and a half long vacation with his grandparents tonight and I will not see him until I get back Saturday evening….these are the things that make me wonder what I might be sacrificing for him. Dad has no understanding about what is going on around him in regards to my family life. I think he would care if he could understand,  but one of the biggest, most prominent issues with his disease is that he has no interest in caring unless it is directly related to him. Frontal lobe dementias make people appear to be completely self centered….no matter how much they may care for their family, they dont think in regards to what is best for the whole, only what is best for him. 

I have started the process of looking at group adult foster homes for him. I dont want to be caught completely off guard if it gets so bad that I can not handle it by myself anymore. He refuses to talk about the future except in terms of him going home, so we are left with only being allowed to deal with this as it comes. I wish more than anything that he were capable of accepting this disease and knowing that we need a plan, but he has never been able to have an open discussion in the past, and now its so much worse. I don’t know why I even think about it. I feel like my brother and I are being sneaky when we are trying to plan for someone to be with him all the time, it feels wrong. If someone has an idea about how to approach this, or plan for his future please let me know! I am all ears. As it stands, this is almost impossible to think about or plan for, with him thinking he is just fine. So how do you tell someone that they are literally losing their mind? Today I feel like it is me losing my mind.

Conversation with my dad

There is a lot of cursing going on lately. It seems my dads new favorite word is f#%k. Usually he is muttering to himself, but the word you will hear the loudest is the F bomb. I asked if he was still upset about having to come back to my house. He told me ” I don’t have to do anything if I don’t want”. I will take that as a yes. I asked if he wanted to talk about his situation. His reply was ” this is ok, but only because I say so, you and your brother think I can’t do anything, but I will show you guys. Next year when I’m off probation (he is on probation for 4 years) I will drive myself to wherever I want to go (his license is gone forever per the medical doc), I will live by myself and I will be fine”. I asked, do you think you will be safe by yourself? “of course, Dawn Marie! why wouldn’t I be?” To which there are a thousand replies regarding the dangerous things he does on a fairly regular basis, but I held my tongue. I tried again, to explain his disease to him with no results. He can remember how to do all of the things he used to do, but when he tries to execute the actions, his mind can not organize the steps to complete the task. He gets frustrated and usually breaks whatever it is he is trying to repair or build by forcing and shoving things into place. He refuses to (or cannot) have a conversation about what we need to do for the future with this disease, he is quite certain that when he is off probation that he will be healed of this degenerative brain disease.

I have watched him  try to mow lawn and he zig zags all over, gets bored, shuts it off and walks into the woods for an hour. When he comes back later he is sure that he mowed the whole lawn (maybe he gets a couple of rows done…in random areas of the lawn), or weeded half the garden when in reality it has barely been started. I always thank him and tell him I appreciate his help. I think he believes that he did all he says he did. He is rollerblading right now, and because he can do that, people think he should be fine alone all the time…its unbelievably hard to explain this to anyone. I can drop him off to skate on a trail five miles and pick him up when he is done. Usually, I have to go find him at a bar or walking down the sidewalk, but he is capable of skating, and he needs to skate, so I bring him. When I ask him to pick up sticks in the yard, because he is asking “what now-it?” he picks up a couple and walks away. The last time he used our lawn mower, I heard it hit a rock and went to look, he had his hand ready to dig under the mower with the blade running. I ran up in time to stop him, but he would have put his hand in there…and he got angry ant me, because he thought I was making a big deal of nothing. He denies everything, completely, absolutely denies that he has ever done anything that could hurt himself or others.  Bring up examples and he says it was a misunderstanding, that everyone else gets to make mistakes but him, we are picking on him. Well its time to go get him from his skate.