Walk Through It

I published this and it was somehow a blank page. I will do my best to rewrite it.

I have spent most of my time that last several years carrying a heavy load of guilt about my dad and what I have not been able to do for him. I have felt that he will never forgive me, especially with this latest admittance into the VA. I imagined that, even in his death he would’t forgive me. Someone I respect very much said to me last week that I have it very backwards and I need to forgive my dad. She went on to explain that the whole experience of being me, all of the crap heaped on by my family, by my dad all needs to be forgiven. I need to forgive. I had never, ever, considered this before.

The first step to accomplish this was to go inside myself and take a walk. Walk through me (my soul) and visit with all of the Dawn Marie’s of my past. From the most recent, back to the earliest memories of me. I am a very visual person and I can really get into this. As I closed my eyes and started remembering, things came back. Lots of hurt, lots of confusion, pain, and on and on. As I visited each “me”, I was to take the old “me” and let her know that she is really okay, that this painful moment passed and we are fine now. I remembered things that I had not in thirty years. When we completed this experience, I had an immediate relief. An immediate rush of emotion that made me cry (and I don’t know where that came from). I opened up a space inside myself that had been filled with all of the “you aren’t good enough, you need to try harder” and all of my other perceived wrong-ness. It was all gone.   I can’t describe the euphoric feeling I had all that day, and actually the several days since. I feel new. I don’t feel guilt. I am sure I will have bad days, but I will not be making myself responsible for this disease any more.

The least unwilling

I drove to meet my brother on Tuesday at noon, we loaded dads stuff into his truck and said goodbye. I had an appointment on Wednesday morning for my own sanity, and an appointment in the afternoon with an attorney to begin guardianship papers for dad. Attorney #1 had to refer me on to a new attorney who deals in these types of emergency guardian proceedings.  Attorney #2 listened to me, listened to several audio recordings I brought with, watched less than a minute of video I brought with, read some of the VA referring information, looked at CT scans of my Dads brain and within four hours had everything in order to present to a Judge in the morning….including a response from the attending PA and psychologist at the memory/dementia clinic at the VA (attorney#2  said she had never even heard of the VA responding to a request from an attorney that fast).  Tomorrow she will file everything first thing in the morning. She said that I will hear from her tomorrow sometime.

I have a list of residential care homes in Duluth that I will start calling tomorrow, and with any luck maybe I will find at least a couple that sound like a good fit for dad…if the emergency guardianship goes through he can’t just decide after a day that he is leaving and pull a disappearing act like at the VA.  I am feeling like this has gone way too smoothly thus far, and am waiting for a bomb to be dropped on me. I have become so accustomed to most things blowing up in my face when it has anything to do with my dad, I just don’t know what will happen to him if this doesn’t go through. He is just not a risk I am willing to expose my family to any longer. My fear of something happening with the wood boiler or the fireplace has come way to close to being reality, and I never want to have to say that I should have done something sooner. If my family were hurt in a fire or our home burned down, I just wouldn’t be able to forgive myself….ever.

When attorney#2 asked if I am willing to accept the responsibility of becoming guardian and conservator, my response was “no, I am not willing, I am just the least unwilling” to do it.

Sunday will have to be for the birds

It was a pretty good day, even in FTD land. We all went to Menards today for some household stuff we needed and immediately lost dad. He found us later after his bird suet purchase. When we got home I put the Minnesota Wild vs Florida hockey game on and Dad was content for two hours. Some pizza for supper, and a hot tub before bed. Even dad couldn’t complain about that!  He asked if maybe I want to go to church tomorrow. I told him that I didn’t think he liked church, and he said ” I don’t, but they have good food to eat”. I will not be taking him to church, it is crazy. He goes in and out to the parking lot, in the bathroom five times, and eats so much of the food that there is not enough for the rest of the congregation! It is a very small church, and the door to go outside is literally in the middle of the wall. He is just too disruptive, and I have learned from past attempts. It will have to be Football and bird feeding for him tomorrow. 

Behaviors……The New Normal.

Since I last wrote anything, there have been so many little things that I can barely begin to think of even one thing. I will say that things had ramped up while at our house. The drive home was mostly in silence, the spitting thing is much worse from the moment he laid eyes on me (my cousin tells me that he does so much better around her and in Duluth). The days go on and the boredom creates a lot of opportunity to do nothing and spit on everything. I keep the hose handy for washing off the deck. Dont get me wrong, there are plenty of things to do, he just has no interest in doing those things. We bought deck seal, and he did help a lot with that project, and did a good job too. He found that the moped is quiet enough that he can take it up and down the driveway and I cant hear it. The latest and greatest thing is “telling on” our 15 year old, Adam. He loves telling exaggerated stories…lucky for Adam, I usually witness at least a portion of the real story, thus knowing the truth.

It has been 90+ degrees out for a week and my dad has sweated through three or four shirts a day. I can not get him to shower. Thankfully, he goes for a swim after rollerblading, as it is the closest thing to clean he gets.

The company in Duluth that does companion care has finally found two people to work with my dad. He has been at his house (not really, he has been going to my cousins) for several days and I never know whats going on up there, only what he tells me…which isn’t much. They can have someone there today, but I have no idea what it will be received like by dad. I will have them get there this afternoon, and maybe it will work out..that would be nice. At this point, I can barely keep up with anything and I could relax knowing that someone will be there. I can only bribe my cousin with money for so long. I asked dads primary doc for an order for home health care, to which I got a lot of phone calls from the nurse and no order yet. It will help to pay for this, but I suppose they want to see him again before he will write the order. I am just so exhausted from all of this that I dont know if I am willing to continue with all the doctors. Dad hates it, and makes it as hard as possible. His insistence that he is fine is getting the better of me and like I have said before, it is easy to pretend that he will be fine as long as he is away from me. Horrible, right?

Bob, the companion caregiver, met Dad on Monday. I asked that my cousins husband be there for the meeting and give me feedback. It went pretty well. Sounds like they did a pretty good job matching him with someone. He is 65 years old, was in the Navy like Dad, and Dad didn’t seem to mind him at all. Dads complaint (because there is always a complaint) is that Bob puts his windows up and turns the air on in the car when it is ninety degrees out. I told Dad that sometimes we have to tolerate people….funny.  Bob will be at Dads today at 1 pm. I received three calls from pops yesterday telling me that he wants to come back here no later than Friday. When I probed a little to find out why, I figured out that he is worried I may drive to North Dakota without him. I have a camper for sale and my buyer is in North Dakota. Holy Hanna, just what will kill me…a road trip for 14 hours with Dad. I can only imagine what that will be like. My  14 hour round trip will be a 36 hour nightmare with stops at gas stations and rest stops every hour or so…stops that average ten to twenty minutes each.  My son says he wants me to take grandpa with so he can hear the stories when I return.

I am getting some feedback that Dad isn’t able to be so good at my cousins anymore now. He is having those spitting fits in front of them now also.  He sort of blows spit all down his face like a baby does, its very bizarre, its kind of a new behavior, and its messy. He did something similar with a family friend last week on the ride home. Our friend, Jeff, lives on a farm and thought Dad could help load some steel onto a trailer at the farm. Dad was more interested in pulling corn out of the field to transplant here in the garden.  He wouldn’t quit asking Jeff about when he could get some corn, to which Jeff told him they would do it after they loaded this steel. Not good enough. Why not now? Dad asked a bunch of times. Finally, Dad was tired of waiting and just went out and pulled out a bunch of sweet corn, and some of Maryanne’s vegetables to boot. I guess Jeff got pretty upset with him and had to explain why that will kill the other corn…in the end Dad put his corn in a bucket and climbed into the back of the Razor. A Razor is a ATV type vehicle with a back seat and roll bars for driving on the road. On the way home, after dad had talked Jeff out of a beer, dad decided it was a good idea to pour his beer (which he had snuck into the car) into his hand and throw it into the air! It sprayed all over the front seats and windshield, and all over Jeffs head. Dad just said “sorry, I spilled some beer”…Adam was with this whole time and started watching him in the mirror. He said that grandpa did it again! after that, he poured it in his hand and smeared it all over the roll bars, the backs of the seats, and all over back there. What the hell is that?  Adam was amazed. Jeffy just shrugged his shoulders and told Adam it was ok, that grandpa didn’t know.  I am pretty sure Dad is done going to the farm. It was a nice three hour break for me however.

So, I will be picking him up on Friday. So he can get here and worry about what he is missing in Duluth, and want to go back by Monday or Tuesday. I know his disease is progressing faster these days, and I should get him into the Doc. He hates his Doctor, and is not nice to him. I hate taking him anymore, it is just so much more work than its worth at this point. There is nothing they can do for him (or me), I feel like I have to reeducate them on his disease every time I take him, and Dad just lies about whats going on (or he just does not know, I am still not sure). I will make an appointment for him today and try again though. I get anxious just thinking about going to the VA.

Try To Picture

I haven’t written in a few days, ok, more like a week. I have been unable to find a way to write about the events in the last week, it is near impossible to describe….It reminds me of the vast, deep, beautiful visual, of say, the Grand Canyon. So you take a picture to share with others and it can not, in any way begin to relay the beauty and vastness of its affect on you. So I will do my best to make it make sense to you.

I will start by saying that the one or two people I could occasionally call on for help, or to borrow an ear, have pretty much stopped answering the phone when they see it is me calling. I have thought about it, and I can honestly say that I did not abuse there willingness to be available. I do think that the overwhelming task of spending more than a couple of hours with my dad is just that, overwhelming. I can understand the hesitance. It is amazingly easy to convince ones self that my dad will be fine, and when you remove yourself from him to have any amount of freedom and relaxation….you just want to continue with your old life. Suddenly, you are a mom, a wife, a friend and a real person again. I can’t believe how easy it is to fall right back into your “normal”. Right now, I am in my sun room watching it rain, and having coffee. It is easy. On any other day, I would be answering for the tenth time” what are you doing?, when will we go to town?, I am coming with, can I shoot my gun?, I dont have anything to do”. I would have made him breakfast, picked up a pile of cig butts from all over the yard, made a second pot of coffee due to him guzzling his like there is a prize at the bottom of each cup, and then wondering if the shop door is unlocked, if he is riffling through a vehicle, or found keys to one. This is easy, to forget about him and his needs for a while.

Fourth of July. I dropped dad off the night before at my brothers house, he has Thurs, Fri, Sat and Sun off work and agreed to have dad up to his house. They were going fishing, golfing, and just hanging out. Sounds easy enough, it is his dad after all. His dad with a terminal illness. His dad with too many needs for him to handle apparently. What happened is truly more than I can put in this blog. What happened is that my brother could not handle spending that much  time with dad, he said things to him, that he regrets now, and ultimately dropped him off at his house. I had received a couple of phone calls from dad that should have que’d me off that this was bad…but it was too easy to be normal for a while.  That is it. That is how it works I guess. That was on Sunday. It is Tuesday. My cousin has been checking on him. My mom called him and tried to talk to him about coming back to my house but he just argued with her saying “its boring there and she wont let me shoot my gun or run a chainsaw. Her and Jim are the only ones who think there is something wrong with me” then his phone died. He called yesterday after hockey to ask if I would come get him in a couple of days. I am sending up a lot of prayer that he stays safe, and hopefully the neighbors are still keeping an eye out for him. He was trying to start an excavator that belongs to some lifelong friends on Sunday. Only God knows what else has happened. I will have to go up there in the next day or so…but its been way to easy to stay home.

Doubting myself and all I do

It is Sunday, and we are back from our weekly trip up north. It was three days filled with hockey, fishing, a wedding and lots of miles put on. After hockey on Thursday morning, Dad wanted to go fishing up the shore to a spot he has gone all his life. We drove up and found the little trail you drive into and back to the lake where you walk a trail to the edge of a steep embankment that you scale down to the edge of Lake Superior. Dad had a tackle bag, his two poles, and a backpack with NA beer and his coffee thermos. He went fishing. I went to visit mom for a while and headed back to get him after a little while. As I pulled in to the trail I saw his poles and bags lying next to some trees just inside the trail. No Dad. I loaded up his stuff and continued to try and get ahold of him, but it just went to voicemail. After driving back in towards the lake as far as I could and scanning the woods for five or so minutes, I saw a bike on the side of the trail and a guy in biking gear coming out of the woods. I yelled to him and asked if he had seen a guy in a white baseball hat out here anywhere, he says “Donny, ya, I play hockey with him. Im trying to help him find his phone”. Apparently after walking out of the trail he realized he didn’t have his phone, and proceeded to start hitchhiking along the Old North Shore Highway in hopes of borrowing a cell phone to call me. Luckiest guy I know, my Dad.  He was completely freaked out by the loss of this phone as he had just a week ago lost his phone fishing at Jims. Dads buddy found his phone after I redirected him to the right spot, down a steep embankment leading to the lake. Both of the poles dad used were broken and the reels were tangled around them. Pretty standard situation for him it seems. I probably should not have dropped him off to stay there by himself, but he is so damn determined that I feel like he should be allowed as much independence as possible…again not wanting the argument. I realize he may do something to get hurt or in trouble, but I feel kind of worn down and guilty that he has lost so much of his previous life to this disease, that I want so badly for him to do the things that are so important to him.  Or, maybe the other truth is that I want so badly to have the life I had previous to this disease, I can not tell. Following the wedding on Saturday, we went to my cousins for a small wedding party for a few hours. I waited as late as I could for my brother to get there after work but had to get going home about 7pm. Dad cried for the first 40 miles.

So, this morning, I heard dad go into the bathroom in my bedroom, twenty minutes later he came out and made a beeline for the outdoors. I realized there was no toilet paper in there when I opened the bathroom door to find my toilet fill to the rim with crumpled newspaper. Now, he is sitting at the table on the back deck with me,spitting his chewing tobacco on the deck.

It is Wednesday again and after I take my son to get his drivers permit, I will drive dad up to Jims house for a long weekend visit.  I pray that it goes well, that my brother can have the patience it requires to spend four days with dad.

Mayo Clinic Patient Creates Documentary to Educate Others on Frontotemporal Dementia | Sharing Mayo Clinic

Mayo Clinic Patient Creates Documentary to Educate Others on Frontotemporal Dementia | Sharing Mayo Clinic.

Managing Frontotemporal Dementia through Caregiver Support – Part I – YouTube

Managing Frontotemporal Dementia through Caregiver Support – Part I – YouTube.

FTD – Planning for Hope: Living with Frontotemporal Disease, a 1-hr documentary film – YouTube

FTD – Planning for Hope: Living with Frontotemporal Disease, a 1-hr documentary film – YouTube.

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.