I drive a lot. I have a lot of time to myself, time for contemplation, time for letting go, and this time has really healed me. I have had so much peace, it almost feels selfish. Sometimes the most innocent thing can set in motion a feeling, and propel it into emotion that has a physical response that catches me off guard..surprises me. So, I was driving right by a friends house this week who I haven’t seen nearly as often as I would like, and called her. She was telling me that her dad (who is awesome) is there helping her with putting cupboards up in her new garage. I felt a little like my heart filled with cement. I had this overwhelming need to stop there just to hug her dad..I felt like I hadn’t been hugged in twenty years. I never did stop because it was Halloween and her dad had left by then, but I didn’t see that coming. I cried. Three times. That was two days ago and I am still feeling it. Maybe after writing it, I won’t feel it as strongly..maybe.
Sometimes when I hear, or read, of a families story involving a dementia or any life changing illness, I forget that they are also having to live with all of the normal parts of their life at the same time. I hadn’t realized it about myself. Along with the everyday, constant, all consuming care that has to be afforded to, in my case my dad, I still had three teenagers in the house and a husband. I am quite certain they all suffered along with me. I still did the laundry, made dinner, paid the bills, took kids to school, driving lessons, football and all the “normal stuff” of living. I don’t know how I did any of it. My anxiety and emotions were on overload everyday. I would have cried with relief had one person offered to help me on any given day. That isn’t to say I don’t have great people in my life, because I do, but I don’t think anyone could realize just how hard it was. I have a much deeper compassion for other peoples struggles than I ever had prior to this experience. I understand the “aloneness” of it. I am a better person because of it. I will do my damnedest to see it in another’s eyes now…and do something to help them through their day. Every person has their story, no one can “get it” because that story isn’t their own…but if I can see the pain in that story, I will act on it. I pray that I never become passive about it. I so badly don’t want anyone to go through this, but that is not reality. So love each other in your deeds, be there for someone today. It can make all the difference in the world.
I haven’t written in a while, I think it may be due to the shift in myself following Dads long stay at the VA. I had what I am going to describe as a peaceful, joy filled summer. The storm was brewing just under the surface, but, I felt more comfortable in my skin than I had in what seems like forever. The idea that I have a responsibility to myself, and to God, to be at peace with myself was an obstacle for me.I know that God created me for love, to give love, and receive love..and it is a difficult process to love at all, or know love when this swirling disease filled with anger, confusion and lack of judgement crawls into your life. The lack of love has been such a part of my story that it was easy to become part of it. So, I guess I am in a much more healthy place now.
We moved dad to Silver Bay Veterans home in September. It was a little bit better than I thought it would be due to my brother coming with. We made an agreement that I would do the guardian/conservator part of taking care of dad. With that comes the distrust, anger, and to put it mildly, dads dislike of me. Jims role is to be there for dad and calm the waters. To be the good son, the one that dad trusts and loves. It is what had to be done. Dad has lost so much that it would kill him to believe that Jim is a part of that loss. He needs someone to blame for these things happening..losing his drivers license, his house, his money, and his freedom. He can not understand that his disease has changed his behavior in any way, and so he believes that I am “doing this to him”. Could you even imagine what that must feel like for him? He truly believes that I have purposefully done him this harm. Anyway, back to the Veterans home. It was beautiful there, it felt like a lodge more than anything. They have a recreation director that really seems to do an amazing job of keeping dad busy…no small feat. I have only received one call about him and that was to tell me that dad ran out of antler for making jewelry with so he cut up a pool stick….apparently this pissed another resident off and a couple of days later the guy let dad know what he thought of him. The thing about dad now is that he doesn’t care what anyone thinks about him. He just kept walking as this guy called him some names, and told the staff he didn’t know the guy was talking to him…so he missed out on his own ass-chewing. The staff has told me that they are learning as much as they can about his disease and are realizing how important it is for him to constantly be doing something. Oh, and the maintenance guy brought another couple of antlers in for dad the next day.
The firefighters dad plays hockey with wanted him at a tournament this week in Duluth, so they arranged for him to stay at my brothers house for three days. They were supposed to take him at 0600, and keep him with someone until Jim got off work….nope. Dad managed to talk his buddy into dropping him off at a friends house, where no one was home. He let himself in, managed to not be eaten by the pit bull (typically not a nice dog to people who walk in when no one is home), got on the phone to the bank trying to change the account information, address, and tried to get ahold of $2000. Thankfully the bank called me first. I had to set limits on his card so he couldn’t spend the money that pays for his housing and care at Silver Bay. When the bank wouldn’t let him change anything, he called me and yelled at me about it. He actually told me that if I don’t send him the money that, I would find out what he will do to me. He also got ahold of another family friend and tried to sell his house to them. Not a great day on the dad front. After some calls to the fire chief and tournament director, we got it handled for the next day, but boy did he make a miserable day for himself on Monday. He should be back in Silver Bay today sometime. I am probably going to have to cancel his debit card all together now. I am praying everyday that he can manage to somehow fit in at the Veterans home. If his behaviors get bad enough, I don’t know how they will manage him.
Finally, there is an opening at the Silver Bay Veterans home. Finally. Dad has been holed up in the VA here in St Cloud since January. He really has a lot of seething hatred for me after this VA stay. Understandable. Our conversations are cold, to the point, and over. I probably would not be nice to a child I believed to have taken everything from me including my freedom either! He never liked me much as a child, or an adult for that matter. But he really dislikes me now. I have accepted this. I think it was easy to play the part of bad guy because of the life I have had with him. My brother is still in his loving graces and that is what we had planned on happening. I will be picking dad up tomorrow morning and heading north. First to Duluth for a funeral (a sweet girl my brother grew up with, and one of dads favorite people), and then on Wednesday to Silver Bay Veterans home where dad will live out his days. Maybe. I find it somewhat of a fantasy that this could actually be the end of the moving around…but for now it is the very best we have. I should change the title of this blog since I only care for dads finances and legal decisions now. I wonder how this will manage to affect me when I am old…I know how it is affecting me now, I am angry.
Well, Dad has been at the VA since January and since then, I have somewhat recovered from the mental trauma caused by his ever present FTD. I decided at about the second month of his stay at the VA that I no longer can be responsible for his happiness…or depression..or anything. I do not own this, I did not cause it, I can not make it end, or fix it. I meditate everyday, I started driving for a fleet trucking company delivering campers from the manufacturer to dealers all over the country and am becoming happy again. I don’t deny that the driving has been an amazing escape, and very healing for me. The feeling of freedom has been a saving grace. We pick Dad up on weekends once or twice a month, and bring him back at night. He goes fishing with the kids when they are able to pick him up, he comes to the house for the day and hangs out until after supper when I take him back. His dementia has changed into a manageable thing since he has been unable to get ahold of alcohol…I wish he didn’t crave it, or he could be at home with caregivers…but we can’t control his medication or ability to drink in any other situation, so this is the best there is for now. I am ok with that…He is not happy under any circumstance, so it is as good as it will ever be for him too. I am ok with that as well.
I had a dream recently where dad came to me….but not dad physically, more like his spirit, or just a knowing that it was him. He seems loving and understanding. In it he says “it’s okay, you shouldn’t have to do this and I am sorry” If I could live with this in me always, if I could convince myself that it is truly some sort of message, what a life changing, soul cleansing thing it would be. More recently, I dreamed that he removed my face from his pictures, and my name from any papers he had. I guess being erased is okay too.
I spoke with a woman yesterday at a Veterans home up the North Shore. Naturally, she had concerns about dads behavior. She sounded pretty negative about placing dad there due to his hyperactivity and behaviors. She said she would, of course, be fair, but she is gun shy due to another patient with dementia who had the same behaviors. It is hard when you have to think about the other residents and how things effect them. She seemed a bit more open to it after I told her that he had been put back on quetiapene to calm him down. I have said this before, but I can not believe that we are the only ones dealing with this in the State of Minnesota. No one will take him. What have other families done? If I don’t find something, he will be in the VA forever. It has been a blessing that they have agreed to keep him, but that place looks like something out of a 1950s psychiatric ward in a bad movie. I hate that he is in there.
My brother and I had a long talk about dads placement in a TBI home, and he told me that he met a lot of the guys in the places where his wife has worked and none of them seemed as bad as dad (she works in homes for traumatic brain injury). We agreed that if we found one for him that he would probably not last long there, and we don’t know where he would go after that. After that conversation, I filled out the application for the Veterans Home. All I can do now is wait…..again.
Our son, Aaron went to visit dad last week. He called from the parking lot when he left sobbing into the phone. I felt so bad for him, he said that place is horrible and grandpa seemed really drugged. I called and asked about a day pass for him, but I honestly don’t believe I could get him in the car to go back. I think I will look for a support group again if for nothing else, to find out what these people have done to find placement for there family members. I have looked before and found ZERO groups for anything like this anywhere near us. I will try again.
I drove to within two stoplights of the VA yesterday and wanted to go visit dad. I didn’t. It is Easter this week and I would like to take him with to Dinner. I probably won’t. Think what you like. I don’t want to be responsible for peoples memory of “that Easter”….And I don’t believe we would be able to get him in the car to go back. I can’t read the future, so I could be wrong. I doubt I would be wrong. I took him with last Easter and it was him, in and out of the church bathroom, in and out of the church to smoke, and he ate so much food before the service was over that there wasn’t enough left for our small congregation to all have food. It was not enjoyable at all, no fond memories made. I will go buy him something and drop it off for him. Maybe a new movie. He has no idea what Easter means, he is scared to death of anything to do with God or Jesus.
When I was very little, my parents gave me an Easter basket and a bunny, I put the bunny in the basket and swung it around until it fell out and then as I was walking (waddling), I accidentally kicked the poor bunny and it ran away. I only know this because it is a part of some home movies that dad took on his 8mm camera, it isn’t like I have memory of it. There is footage of dad holding me, and he looks at me like he is so in love. That is not a memory either. It’s just what I can see on a movie reel, that he loved me once.
During my trip down “memory lane” I experienced memories I had literally forgotten, not thought of in twenty- thirty years. Many were not about my dad. Many were just horrible things that happened. To me. Some due to bad choices on my part, some from things that I had no control over,due to being very young. The whole event of going back and finding those young “me’s” and letting her know that everything is okay, and there is no reason to be afraid anymore, created a real physical pain in me. If you have ever been hurt or betrayed by someone who you loved or trusted, then you know the stabbing in the gut feeling I am talking about. It was actual physical pain I felt during this exercise. As I went through removing the pain, it opened up a feeling of being very light, and open. I was told that guilt isn’t a real feeling, it is a manifestation of some other feeling caused by outside influences…expectations from others that I am not fulfilling. I don’t feel guilt anymore. That is not to say that in my human-ness, I won’t feel guilt again at some point, but I feel like I can talk myself through it and let that go the next time it shows up. I have forgiven myself, my dad, and some others while I was at it. I will need to fill that open space inside me with new experiences, I will do the things I love doing, be with the people I love, and that love me back, and my empty space will fill up. I am doing everything I can to help my dad along his dementia journey. If that means, for now, just keeping him safe and others safe from him…then that is what I do. I will find him a place he can live and be active, but until I find that place, he is safe at the VA.
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.