spiritual health

Finding Closure

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I spent the week after the husband’s death thinking about his memorial service. I was afraid that if I didn’t have something right away, the pace of life would accelerate and make it harder to return to that needed task. I needed whatever measure of closure a service could provide.

The church was available June 30. We were penciled in for a 1:00 pm slot and the planning began. And that is how it has to be done – I picked a time convenient for my purposes and then found out who could be there and who couldn’t. It’s very hard to find a time that’s good for everyone.

I was surprised, as the word spread, that many friends and relatives were making time in their busy lives to come. Since Dennis had been disabled, at best, for the last five years we had been in Hayward, I was concerned that our gathering would be small. Not many knew him well. I wanted to make sure that those who did come would know him better when they left.

I knew that one important person would probably not be there – daughter Julia, who was due to have her first child 20 days later. It would not be in their best interest to make that trip from North Carolina to Wisconsin. We planned the service to be shared live online, since our church had that capability. It was a good choice since nearly as many watched online as were present in person.

Family began to gather the weekend prior to the service. In between fixing meals and visiting, ideas were presented, volunteers were conscripted, and plans fell into place. Every time I wondered how to do something, the answer came to light shortly afterward. I did not worry. I enjoyed the planning, and I was greatly blessed by the service. It was what I needed, and I think others found it meaningful as well.

One of the striking moments of the service came at the end. A recording of one of Dennis’s favorite songs was played, followed by an audio clip that he left on daughter Esther’s phone. Hearing him speak that message to her was like hearing him speak from the other side of death. It was joyful and full of hope, and that is how Dennis should be remembered. And I expect that now his joy is even more real, and all his hopes have been realized.

Many who heard the song have asked to hear it again. This is the link to click for the song “Slow Down” by Chuck Girard

https://music.youtube.com/watch?v=OAiKCpX8KtE&feature=share

It’s over, and hardly seems real.

Such a Hard Thing

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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.

Post-Mayo Clinic

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Thinking it Over

We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.

I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.

The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.

We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know.  At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all.  I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him.  I think he feels held and loved by God more because he needs it more.

He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea).  We’ll see how that works out.  It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.

I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that.  The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm. That’s it for tonight.