We’re 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 Lewy Body Dementia . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. It is progressive. 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.
I Just Have to Say... 
I am so sorry about your Dad’s diagnosis. My Dad passed away in 2012, he had Lewy Body. I’m getting ready to launch a blog on “Lewy”, our story. It’s tough.
Actually, it is my husband I’m writing about. I’d really like to hear about your experience. Were you a caretaker for your Dad?
Oh, that’s even worse I think. I did a lot for my dad. He spent his last 15 months in nursing homes, the last 14 in memory care. It’s a very difficult disease.
Thanks for following Nancy, and I hope you’re able to write about your experience. I think its valuable for yourself and for others.
Just came across your blog. My mother was diagnosed with Lewy Body Dementia a year ago. Like you and your husband, we are looking at how God can use this … it beats being bitter and angry. Lots of ups and downs, but we are learning something more of His grace every day. I pray that you continue to find the same grace, as well as joy, humor, and peace in this season. God wastes nothing as we hang onto Him in a broken world.
Very well said. Share how it’s going with you whenever you can. Prayers for all of you, because it’s a family experience.
You are in my prayers.
Thank you so much!
I am still determined to appropriate the Biblical promises that come through the laying on of hands and prayer that we were privileged to minister to Dennis. Often, faith is a battle. Sometimes, a long-term battle, but I’m believing for better outcomes. After all, God is a “rewarder” of those who diligently seek him. Love you both.
We are fully expectant of that good outcome whenever God decides. Thank both you and Lisa for your part in it.
Love you guys…I’ll be praying for you to have all you need to be able to deal with whatever comes. I will put both your names on the prayer roll at the temple too..
Thanks Lorie. Love always helps, and prayer definitely does.
Shirley, you are one courageous lady! I admire your honesty about this difficult season in your life and your gracious words for your husband. I hope that you feel very loved and cared for by God in this journey, too.
We do! Nothing like an unexpected difficulty to make friendship with God a lifeline and a reality.