Agitation & Understanding

My last 2 visits with Mike have reminded me more of how Mike was when he was home with me, with a few differences. The perseveration is still there, but it's one sound instead of repeating a word or phrase over and over. His walking and determination are stronger lately and he wants to get away. He understands what I am saying, but doesn't really comprehend or understand the "why". 

Last week, the weather wasn't too cold and we walked for a good while outside. Mike really wanted to continue down the road, away from the facility, and it took quite a bit of coaxing and maneuvering to get him to turn around each time. As you can see from the photo, he was so anxious to get outside that he wouldn't let me get his jacket on him. After walking for 10 minutes or so, he calmed down enough so that we got his arms in the sleeves. At one point, we stopped and sat on the deck for a little while and he did answer a few questions. 

At lunch, he seemed to have some trouble chewing his food. "Mike, do your teeth hurt?" NO!  "Do your gums hurt?" NO!  He rubs his head a lot. "Is your head hurting? Do you have pain?" NO! "Does too much noise bother you?" YES!  I was glad to hear a yes so that I knew he could say another word and hopefully it meant that he really wasn't feeling any pain. Unfortunately, there's nothing I can do about the noise in the facility or even as we sat outside. It's hard to find a quiet spot inside and the road is fairly close outside. Then he blurted out I want to get out of here!  This has been a cry of his heart for almost 7 years. I've shared before about a time when we were walking on the farm and it suddenly dawned on me that he wasn't talking about the location, but his body. He wanted out of his body and mind that didn't function correctly anymore. At that time, I asked him if he meant his body and he responded with a resounding YES!! Recently I shared this with friends who came to visit me and Harrison said: "It's his soul crying out." Yes, yes I believe it is and only God has the power to free him. 

It doesn't matter where he lives physically, his mind and body are trapped by injury. Yet the only way his damaged brain knows how to deal with this is to try to run away physically. I really think he understands so much of what I say, but doesn't have the capacity to understand his own limitations and what other people are trying to do for him. It's hard to explain. Physically, he is able to stand up and walk by himself with the walker, but he doesn't initiate that movement. In some ways this is good, because if he did, he would be trying to walk out of the door or he may fall. Often he will NOT walk with the staff, this is not a good thing because he needs the physical activity and sleeps better at night. His incontinence makes him uncomfortable, but he is not able to communicate that he needs to go or needs to be changed. He doesn't like being dirty, but he resists being cleaned up. He used to cooperate with me to shave him or help brush his teeth, but now it's a struggle. His mind simply doesn't work right. 

It is so sad and I have to remember all of the above and that there truly is nothing I can do to help him get away. I have been reading the Bible to him and trying to sing, but his agitation is great right now and I cannot tell if he is listening or even hearing. The only thing that really seems to calm the agitation is walking, especially outside. 

Yesterday was cold and very windy so we walked the halls several times. Each time we came to a door, we faced off about not going outside. The first couple of times I had to force him to turn around, but the last few times I gave verbal cues and he turned around himself. That's how I know he understands, at least somewhat. I also know that if his mind were working correctly, he would do everything possible to cooperate and get better and he would be talking with people. Mike always loved being with people and talking! Plus, he liked noise. I was the one who liked silence, at times. He never did. 

As always, thank you for your thoughts and prayers for us. We appreciate you and need the prayers. God works through the prayers of his people and I know you are a huge part of our story. Thank you for "holding our arms up" in this battle to stay strong on a field of suffering and separation. We love you.

Exodus 17:11&12

Whenever Moses held up his hand, Israel prevailed,

and whenever he lowered his hand, Amalek prevailed. 

But Moses' hands grew weary, so they took a stone and put it under him, 

and he sat on it, while Aaron and Hur held up his hands, 

one on one side, and the other on the other side. 

So his hands were steady until the going down of the sun.  

Peaceful Haircut

Yesterday, when I arrived, Mike was sitting in the dining room, clutching his Vikings pillow and sound asleep. The CNA started to wake him, but I asked her not to. It was so nice to see him peaceful, and after a while I took the opportunity to try to trim his fingernails. I successfully finished one hand, but when I tried to move the pillow from the other hand, he, Mr. Omm and his body woke up. One by one with pauses in-between, I was able to clip his right-hand fingernails, but trying to smooth them with the file was out of the question. 

We walked the halls and briefly went outside before Dot was ready to cut his hair. I handed him his new Sports Illustrated and he sat very still - partly looking at the magazine and partly napping. I was so glad! It makes it much easier and less stressful for everyone. Trazodone was started during the day last Friday, and may have contributed to his calmness while getting his hair cut, but otherwise he was much the same. We did walk more than we have recently, so that was a plus also.

A dear friend from our missionary days sent me an email after my last post and shared a couple of stories from his time of visiting people with dementia or cognitive illness and how it was apparent "that we can communicate in the spirit what we cannot communicate in the flesh." He shared that even though the person could not remember names or possibly even who they were, when he read the Bible to them it awakened their spirit. His letter was such an encouragement to me and I want to share portions with you.

"...she did not remember her husbands name. But when I read the Bible to her, she would repeat with me the Psalms that she knew and she also would speak her husbands name when we prayed together. Her memory came back as God spoke to her spirit through his word and prayer." 

"...he went on to teach me the meaning of the Psalm where just minutes before he couldn’t even make sense of who he was....I hope that gives you some encouragement that Mike is most probably communicating with God in his spirit. His body is being controlled physically by the brain damage, but his spirit is alive, whole and well."

What comfort and renewed purpose those words have given me. As I read the email, I was convicted and ashamed to realize that I rarely read the Bible or sing hymns to Mike any more. It used to be a regular practice, but with no seeming response from Mike, it began to slip away more and more. These stories reminded me of when Mike joined me in singing Amazing Grace while recovering from his accident. If I remember correctly, he had not spoken up til that time. I would regularly sit by his bed and read Scripture and sing hymns. It was the sweetest sound ever when I heard his voice joining mine.

Even at The Harbor when he was agitated or uncooperative, he would often calm down if I began to sing to him. I have tried it at AH&R, but so far it has not worked. He may pause from his ommms for a few seconds, but that has been it. Nevertheless, I am going to try my best to read a passage of Scripture and sing to him each time I visit again. 

In Appomattox, it is harder to find a quiet spot within the facility and now that it's cold, sitting outside does not work. Yesterday we made our way to the dining room, after lunch had been cleared away, and had about 10 minutes when there was no one else in the room and the TV was off. I read from Ephesians and a bit from Romans. A couple of times Mike became quiet and peered at the Bible. I tried to sing, but my voice has not fully come back after being sick, so it was more of a squawk. Anyway, I'm glad to be reminded of the importance of Bible reading and familiar hymns or worship songs and hope it will help Mike. What beautiful words to remember..."his [Mike's] spirit is alive, whole and well"! (Thank you, Steve!)

Ephesians 5:15-21 

Look carefully then how you walk, not as unwise but as wise, 

making the best use of the time, because the days are evil. 

Therefore do not be foolish, but understand what the will of the Lord is. 

And do not get drunk with wine, for that is debauchery, 

but be filled with the Spirit, 

addressing one another in psalms and hymns and spiritual songs, 

singing and making melody to the Lord with your heart,  

giving thanks always and for everything to God the Father

in the name of our Lord Jesus Christ, 

submitting to one another out of reverence for Christ.

What to say...

There has not been much change, if any, with Mike since I wrote over a month ago. The Depakote was restarted and there may have been a slight calming effect for a few days, but really not noticeable. He continues to rock back and forth and the left leg works up and down as Mr. Omm doesn't let up. 

Christmas day was mild and sunny and Mike was in the mood to walk. For the first time, we walked outside, turned left and walked to the end of the parking lot, up the hill to the sidewalk, turned right and walked parallel to the road and down to the other end of the parking lot. Thankfully we maneuvered the hills without incident both going up and coming down. We continued around the end of the parking lot and followed the sidewalk to the outside deck, sat for a while and then returned to the front door and back inside. It's the most I've walked with him since he came to AH&R. 

I brought him a few gifts, but he wouldn't open them. I opened them for him, but he had no interest. I had ordered him an OSU blanket. The wrapper said OSU, but when I took that off, it was an Aztec blanket - who are the Aztecs?! Oh well, I didn't want to bother trying to return it and the colors are almost the same as OSU. 

Several local churches or civic organizations had come by and given the residents gifts of socks, word search books, pens, toiletries, etc. I organized those and wandered down the hall to give away things Mike wouldn't use. 

Last week I was able to speak with the Nurse Practitioner who is affiliated with Mike's new insurance. I am pleased with this insurance because this NP will see Mike every week and be more accessible to me. She will work closely with the other doctors and NP's who are already involved in Mike's care and she will be able to contact them more quickly than I can. She saw how agitated (or in-motion) Mike was and we discussed medication again. Later that day she let me know that she had spoken with the Psych NP and they were going to try giving Mike Trazodone during the day to see if that would calm him. We discussed the brief time when Mike seemed better after starting the Namenda, and she thought it was possible that his body quickly became adapted to it and therefore the improvement didn't last.

I so appreciate your prayers. It is difficult to see Mike like this all the time. I'm asking God to be merciful and hoping that Mike is able to communicate with God through his spirit. I really believe Mike understands quite a bit, but cannot verbalize. While I cannot hear his spirit, God can. Meanwhile I pray that this injury, pain, agitation, darkness, confusion, suffering will be lifted from Mike. I cry out to God for him and I thank each of you who do as well. 

Dear God, please be merciful to Mike. Release him and heal him in Your time and way and help me to persevere in what You have called me to do.

Psalm 57:1-3

Be merciful to me, O God, be merciful to me,

    for in you my soul takes refuge;

in the shadow of your wings I will take refuge,

    till the storms of destruction pass by.

I cry out to God Most High,

    to God who fulfills his purpose for me.

He will send from heaven and save me;

    he will put to shame him who tramples on me.

God will send out his steadfast love and his faithfulness!