relationship discussions

Conversations

/ Shirleyjdietz / 10 Comments

Conversations with the husband are rare these days. He often talks at length, unaware that his speech is unintelligible. Most of the time his control of speech muscles is minimal, but there are those exceptional times of clarity. It is then that I get a glimpse of what his mental status is.

Today I went over to him because he seemed to be restless, and I thought a little re-orientation would be helpful to calm him. We talked about his memory and who he remembered. I asked him if he knew who I was. He did.

“You’re my wife.”

“Well, I have two rings on my finger. One of them is yours.”

“How many rings have you got on?”

“I have two rings on my finger. You see this?” (holding up my hand)

“Yeah, I see that as four fingers.”

“Yep, and see the rings on that finger?”

“Yeah.”

“One of them is my wedding ring and the other one is yours. One of them is the diamond that you got for me, and the other is your wedding ring that they took off you at the hospital. They were afraid your hands would swell up and it would be too tight.”

“And what ring of mine are you wearing?”

“Your wedding ring.”

“Oh yeah. (pause) Are you married to me now?”

“Yeah, don’t you remember we got married?”

“No.”

“Well, how did I get to be your wife if we didn’t get married?”

(thinking hard) “Yeah.”

That was only one of the interesting exchanges today. Earlier he told me that another me came in the room from his left and joined into the me standing at the bedside, and I was transformed into someone even more me. I’m wondering if this isn’t the beginning of Capgras syndrome, which I’ve heard so much about with Lewy Body dementia. If only the other me’s were able to help out a little more, maybe I could get some rest. Wishful thinking…

Staring out the window at the snowstorm after our conversation.

Being “Right” Comes Full Circle

/ Shirleyjdietz / 1 Comment

(It has been suggested by the husband that I write this to his daughters. He has Lewy Body Dementia, and once in a while, it adds to life instead of just taking away.)

We were reading a thoughtful paragraph on humility this morning, referencing people who are always right about anything and everything. Dennis laughed and said something that our youngest daughter had said to him once. “I am right, because I am a Dietz!” It was said tongue in cheek and they laughed at it at the time too. Then he got quiet and continued, “I love our daughters so much. I hope they know that.”

It was a special moment and we continued talking about the meaning of that conversation and why the memory of it sparked such gratitude and love inside his “dad heart”.

During the years our daughters were growing up at home there were so many good times for us as parents and for them as children. There were also times, not so good, when they felt distanced from their parents. The role of provider was always of high concern for Dennis, and required a lot of his attention. Maybe small people (children), having limited experiences, were not as interesting as other friends and business associates. He never intentionally conveyed this to them, but it was conveyed nonetheless.

In addition it was natural to assume that children’s opinions, reasons, and thought processes were still to be directed and molded, not listened to and considered. This attitude also was never intentionally spoken, nor was it applied 100% of the time, but over the years it was felt, sometimes acutely. Although Dad provided well and loved them, he didn’t know them personally and was often clueless as to what they were feeling. Perhaps they heard more of “don’t leave toothpaste in the sink” and “your lights were left on – go turn them off” than the things daughters need to hear from their dads.

So what does it mean when a daughter can tease, laugh and point out some hurtful flaw when talking to her dad? What did it mean that she could remind him of that “always right” attitude in a gentle conversation (well, I don’t actually know how gentle it was or what it was about because I wasn’t there…)? To him, it meant forgiveness. It meant that she wasn’t afraid to remind him of that proclivity of his. It was acknowledgement and grace extended. And it was love.

The husband has mellowed so much in the last few years. Retirement has put the distraction of being a provider behind him. He fully realizes those things he has missed by not being more aware, more curious, more persistent about knowing his children. He has also been diagnosed with a heartbreaking condition. But it has turned into a blessing. It’s almost as if his heart had to be broken in order for him to know what was in it. It’s amazing to think about.

Although he is disabled, he has traveled long distances to see each of his two daughters get married, during pandemic times. He would not have missed these opportunities for the world. “Being right” has come full circle and is now much more like “Being in love.”

It provides hope for us all. We can grow, learn, change. The whole story doesn’t have to be pretty for the outcome to be good. God be praised for his transforming power, his gentleness and his wisdom, and his mysterious ways.

Such a Hard Thing

/ Shirleyjdietz / Leave a comment

Such a Hard Thing

6-20-2019

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

/ Shirleyjdietz / Leave a comment

5-27-2019

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.

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