Such a Hard Thing

Such a Hard Thing


If it were not for hugs, I would not know what to do to preserve the relationship between my husband and myself. Sometimes it is all we can do. We have to quit talking and hug.

We often hit an impasse when he attributes his symptoms to something other than Lewy Body and I remind him that LBD is the most likely cause of most all his symptoms. “That’s just a name. Nobody really knows what it is, what causes it”, he will tell me. Whereas he is onto something big that may prevent LBD and other dementias. It’s something that God wants him to pursue, record and publish.

He wavers. Every now and then he wonders if he has heard correctly what God is saying to him. He will even think that LBD is something God is using to get his attention and correct him in his ways. He will get very introspective and cry. He might even conclude that God wants him to quit trying to convince others and trust instead. But he cannot quit thinking, researching, striving, so the next time fear or anxiety strikes he is right back in the game. There is always a new plan to present to me first, then to whomever he can get to listen and perhaps act.

One morning after requesting a serious talk, he told me that he would never hold it against me, or others, for not understanding. It was his fault for not being able to explain it well enough. I told him it was not a matter of understanding, it was a matter of believing. To him, his theories are facts that others should be able to understand. To others, his theories are just that, theories. And they are not the most likely explanation for what is happening to him.

He often suspects that I have been leading people to view him as unreliable in his ability to think and reason. I get requests to not do this, and especially to “change my song” when talking to him. He gets frustrated with me but is not angry, just obsessed and persistent. For that I am thankful.

He is seeing his illness as a very spiritual experience. He hears God speaking through it, and I agree that some of the things he hears are right on target. He has changed his mind on some important issues. But after he feels he has gotten the lesson and accepted God’s correction, he then looks for physical healing and wonders why God is withholding it. Then doubt, guilt, depression and self pity come rushing back in. He is more in touch with his feelings than ever before in his life. He cries nearly every day.

He is not crazy. He talks knowledgeably about many things. It’s his conclusions and his obsessions that make people question him, and they would do that even if I told them nothing.


Endless Discussions


Yesterday, because I was visibly sad, the husband and I had several conversations about our relationship. I tried to tell him, without being harmful, why it is that I have trouble deciding to take him seriously, or relying on his decisions and assessments.  I know it must be hard to hear that kind of thing. I don’t think he understood and he still thinks that I am wrong in taking his LBD diagnosis into consideration. He thinks everything points toward his recovery.

We had discussions about the CO alarm at 4 am, which he is sure is because of variations in the power grid.  We should call the power company and have them do something about it – I don’t know what.  We had discussions about tithing the proceeds from the sale of the house, about how to identify where the Lord wants tithe administrated, about who can decide these things. We had discussion about the supplements he ordered and wants to return, thinking he doesn’t need them because he is no longer on blood pressure meds. There is no trace of who to get that money ($250) back from that I can find, and he is useless in tracking things on his phone or computer.

He went to church – two services – yesterday to hear piano player Huntley Brown. He sang his heart out and greatly enjoyed the music and worship, but was totally worn out by the effort.  He got tired in the morning just making one side of the bed.  Somehow the tiredness became my fault for helping him do it.  Aunt Lois is also tired all the time because I help her too much, keeping her from getting stronger.

In many respects he is like a child in an old man’s body.  I can tell when he is coming by his slow, shuffling sound.  He always appears very old and slow.  He does unusual things, like standing up in church and directing the music, waving his arms but he is innocent and entirely abandoned in his actions – no shame, but joyful and unaware of strangeness. He doesn’t care what others think or how they perceive him and that is the child part.  I don’t want to take that from him, but it puts me in the position of being a caretaker over someone who is not quite “with it”, rather than a partner in an equal relationship. I have to be the one who considers all sides of an issue and whether to affirm or deny his course of action.

In all our discussions, I primarily wanted to be understood but I don’t see that it happened.  To his credit, he was always sincere and soft spoken, which was helpful.  I took a walk late in the evening and encountered Den and MP, who joined me.  They listened to me and I was comforted just to know that someone cared about my tears and would let me talk.

I struggle right now with a sense of displacement.  The house has been sold.  We are to leave Mom’s condo and set ourselves up in the other one. We need to decide whether to get our stuff in Greensboro transferred up here.  We need to start paying rent.  Everything about our situation seems to have changed and I’m trying to sort it all out.  I need God to reassure me that we are here for a reason and that we are still in his will and plan for us.  I have attitudes and feelings that I’m not comfortable with but don’t know how to dispel.

Ads may (probably will) appear on this page which are not chosen or endorsed by me. I’m sorry, but that’s the world we live in…