Thanks, Mr. B

Today is Mike's 62nd birthday. I celebrated with him yesterday. He was there, but not. It was a gorgeous day in the low 70's with a gentle breeze. I wheeled him out to the covered deck, presents and a small cooler in tow. If it was in my power to disinvite Mr. Omm, I would, but he was our constant companion. I tried to interest Mike in his gifts, but he wouldn't even take them out of the bag or try to open the cards. Omm, omm, omm.  So I showed him his gifts from his Mom, sister and me. Opened all of his cards and fed him yogurt, cookies, and watermelon, plus his lunch when it arrived. He wants to put everything in his mouth now. I gave him a deck of Uno cards and he tried to bite the box, a Nerf football - mouth. I tried to toss the football and get him to toss it back, no. Tried playing Uno, nothing. It's hard to describe what Mike is like now. Here's a link to a short video I took yesterday to give you a glimpse. https://photos.app.goo.gl/7kMgbcgzS3vt2a8L8. 

Recently, I was messaging with a friend who lost a loved one and one of her comments helped me to realize that part of my new struggle, was that again I have lost part of Mike. It's another death. Six years and 4 months ago, I lost the Mike I had married and known. I had grieved the loss of his personality and who we were and had accepted the new Mike and what we could now be and do together. Now there is a different "new" Mike. Whereas I could still take him out to the park, Subway, walking at Lowe's and the dentist, now I can't take him anywhere. We were able to play board and card games and he would talk with me sometimes, now we cannot do those things and he doesn't talk. I'm not giving up hope that he will get better, yet I must accept where we are now. My visits consist of wheeling him around the halls or outside, feeding him, washing his face, attempting to brush his teeth and shave him, and tacking photos and cards to his bulletin board.

A bright spot in all this is Mr. B, Mike's 3rd roommate. Friday, August 17, Mike was moved to the other wing. Mike's former roommate Mr. N (2nd roommate) had been discharged that morning and they needed a room for a lady to come in. Mr. B. did not want to move and has been there several months. Mike and I went down after lunch that day to meet Mr. B and introduce ourselves. The room is bright and somehow feels bigger. Mr. B's mind is clear and I enjoy talking with him. He's had a lot of sadness in his life and said his daughter doesn't visit very often. The day after Mike was moved, I was heading out of town with my Mom and sisters. I wasn't thrilled to have Mike moved, but since he hasn't really settled in yet and after meeting Mr. B, I saw the Lord's hand in it. Mr. B assured me that he would keep an eye on Mike and he would call the nurses if he saw that Mike needed something. "If they don't come when I push the button, I'll holler to get someone in here." I laughed.

Back in Mike's room yesterday, after our "celebration", I asked Mr. B how the week had been. He said he and Mike had gotten along just fine. He said Mike had dropped his Brutus Buckeye pillow so Mr. B used his grabber and gave it back to Mike, who promptly threw it back at Mr. B. Mr. B gave it back to him again and he did the same thing. "Now Mike, that's your pillow. I'm not going to keep it. I'll put it right here beside me in my wheelchair for now." He said Mike seemed content with that. Another time they were tossing a small pillow back and forth between their beds. Mr. B said they did that for a good while and Mike seemed to like the game.  He said he talks to Mike and thinks he is a good guy. It makes me smile that Mr. B is interacting with Mike and watching out for him. Next weekend, Keegan and family are coming and we'll have a bigger birthday party. I want to invite Mr. B to join us on the deck. He said he'd never been out there.

I tried to brush Mike's teeth and shave him, but he kept grabbing my arm which he has been doing for quite a while. I investigated his mouth as best I could without getting bitten, and I think he may have a bad tooth or some issue with his gums. Mr. B said I needed a bright light to look inside - great idea! - I used my cell phone flashlight and the gums looked swollen on the upper right to me. I informed his nurse and she was going to write it up so that we can either have Mike seen by the dentist that comes to the facility or make plans to have him taken out to one. I hope and pray that can happen this week. I don't know if he will let anyone prob around in there without being sedated. Since his current state could be due to anesthesia, I'm leery of more sedation, but if he's in pain, something needs to be done. We'll just have to see what a dentist says.

Due to the generosity and thoughtfulness of our cousins, my Mom and sisters and I enjoyed a gorgeous and relaxing week at Myrtle Beach. It was a wonderful get-away for us all and a special time together. We sisters took a long walk almost every morning just after the sun came up and then I remained on the beach and enjoyed doing my yoga stretches amid the sound of ocean waves breaking on the shore. God's beautiful creation was everywhere I looked. I thought of Mike often since the beach was his favorite place to be and I would love to be able to take him there. That's not possible now and may never be. As I thought about that, I realized if Mike never sees another beach this side of heaven, once we are in heaven, that won't matter because it will be even better and the beauty here will pale in comparison.

Psalm 33:6-9 NIV

"By the word of the Lord were the heavens made,

their starry host by the breath of his mouth.

He gathers the waters of the sea into jars;

he puts the deep into storehouses.

Let all the earth fear the Lord;

let all the people of the world revere him.

For he spoke, and it came to be;

he commanded, and it stood firm."

Anxiety, Yet Praise

David got it. He questioned, cried out, didn't understand and didn't bottle it up. His anguish and pain, his questions and feelings of being overwhelmed and downcast, and his resulting decision to continue to seek God and praise Him through it is all written down for us. I am forever grateful. His Psalms/poetry teach me how to handle the tough. They let me know it's okay to go through a gamut of emotions and lead me to pant after God. God is the only one who fulfills, holds, sustains, and understands fully. He never leaves us and never will.

I went to see Mike last night and it wasn't good. Agitation, seemingly uncomfortable, omm, omm, omm. He wasn't grabbing his head this time, but seemed like he wanted to get up. The CNA said they had just laid him down. I fed him his supper, but he was not chewing his food well (thankfully he didn't choke). Maybe it was sundowning? Maybe my being there later in the day confused him? Maybe he was overly tired? All questions that will not be answered. I tried rubbing his arm or holding his hand and he pushed me away. I tried getting his shirt straight instead of balled up behind him - he pushed his back stiff against the bed. Nope! Not going to cooperate. I know he's usually worse in the evening, so I made a mental note to stick to visiting in the morning and early afternoon. Sometimes I think I agitate him more and so I didn't stay long. 

This morning I read the following Psalm.

Psalm 42 (NIV)

1 As the deer pants for streams of water,

    so my soul pants for you, my God.

2 My soul thirsts for God, for the living God.

    When can I go and meet with God?

3 My tears have been my food

    day and night,

while people say to me all day long,

    “Where is your God?”

4 These things I remember

    as I pour out my soul:

how I used to go to the house of God

    under the protection of the Mighty One

with shouts of joy and praise

    among the festive throng.

5 Why, my soul, are you downcast?

    Why so disturbed within me?

Put your hope in God,

    for I will yet praise him,

    my Savior and my God.

6 My soul is downcast within me;

    therefore I will remember you

from the land of the Jordan,

    the heights of Hermon—from Mount Mizar.

7 Deep calls to deep

    in the roar of your waterfalls;

all your waves and breakers

    have swept over me.

8 By day the Lord directs his love,

    at night his song is with me—

    a prayer to the God of my life.

9 I say to God my Rock,

    “Why have you forgotten me?

Why must I go about mourning,

    oppressed by the enemy?”

10 My bones suffer mortal agony

    as my foes taunt me,

saying to me all day long,

    “Where is your God?”

11 Why, my soul, are you downcast?

    Why so disturbed within me?

Put your hope in God,

    for I will yet praise him,

    my Savior and my God.

I don't cry as much as I used to, but today in church when I asked for prayer, my voice cracked and tears came, my heart beat wildly in my chest and anxiety was great. Where did all that come from? Anxiety is a strange thing. There are times when I know in my mind that I'm anxious or stressed, then there are times when I don't realize it until my body tells me - headache, pain between my shoulders, neck stiffness, heart racing, or shortness of breath. Yesterday and today I didn't feel like I was stressed, but my body told me otherwise. I'm not a huge advocate of medication, but I am thankful that I have some when it's necessary. Today was necessary. 

With the help of modern medication and David's Psalm, my body is calmer and I will put my hope in God and yet praise Him, my Savior and my God.

Better

Today was better and Mike did fairly well getting his hair cut. The lady that comes to the facility to do hair every Wednesday was quite kind and worked with us as best she could. We didn't try to move him out of the wheelchair. The less Mike is messed with, the better. I tried to hold Mike's head still part of the time; and he held it still himself a few times. His hair is less wild and I sort of washed it with a washcloth and shampoo, so I would assume it feels better also.

Mr. Omm was there, but not as agitated or intense today and Mike wasn't trying to shift his body and legs like yesterday. He would still rub his head, but it wasn't the almost angry grabbing that he was doing. After his haircut, we ventured down to the dining room and played Bingo. After a while, Mr. Omm got bored and went elsewhere. I would repeat what the caller said, point to the square, and Mike would place the chip. He would try to put chips on ones she hadn't called too. After Bingo, we played a couple of games of Sequence while we waited for his lunch. He wasn't quite with it, but at least it was a diversion for a while and he didn't exhibit signs of distress or pain other than rubbing his head. Maybe that was due to the new haircut. 😊

He ate well and then started to get more antsy, but he had been in the wheelchair all morning. It was time for a nap and change of position. The boil or infected spot on his back looks much better and I am hopeful that we are on an upswing. I am so glad I went today and saw him having a calmer day.

Y'all certainly see my roller coaster of emotions as I share on here. Sometimes my sharing is raw. Thank you for your grace and love to me in the highs and the lows. Writing and sharing is therapeutic. There are times when I think I shouldn't write when I'm low, and sometimes I don't, but it's the reality of our situation, the reality of most people's lives. We have lows. The key is not to get stuck there. I try to look for the bright spots and trust Jesus, the Holy Spirit, and God's word to pull me from the ditch. There are always bright spots and God's word is full of light and truth. Satan wants to bury us and fill us with lies in the low times. Don't let him! Feeling low? Run, grab the word of God and silence the enemy's lies with the truth of The One who made us. The One who wants what is best for us and knows what that is in any and all circumstances, even when we don't understand His methods. Our human minds cannot possibly comprehend what the Almighty God knows. Our job is to trust that when He says He came to bring us full life, He means it. Let's live the full life He has given to us!

If you are reading this blog and have not accepted the truth that Jesus is God's son who lived a perfect life and died a cruel death to pay our penalty of sin, then rose from the grave conquering sin and death, please do not delay to search God's word and find out for yourself all that has been done by Jesus for those who believe.  The Gospel book of John, plus I John, II John, and III John are great places to start in the Bible. I want to see you in eternity one day. Don't delay. It is a matter of life and death.

John 10:10 (NIV)

"The thief comes only to steal and kill and destroy; 

I have come that they may have life, and have it to the full."

Nighttime Thoughts

I called to check on Mike after 10 last night and the RN said he was sleeping. He had been agitated at supper, so she gave him more Tylenol and that seemed to help. I was thankful to know he was resting peacefully.

As I laid in bed last night, reviewing the day, I realized that the way Mike scanned the room and focused on the bulletin board was different. He actually seemed to be taking in his surroundings where lots of times he seems totally oblivious to what is around him. That's a good sign. He stopped and focused on photos of family and friends. People who were familiar in a room that is totally unfamiliar. Hope - it's never far away, even when the noisier clamor and chaos of the day hides it. In the quieter moments of reflection, I see it sitting right where I left it.

Today Mike is scheduled to get a haircut at the facility. Please pray this goes well. I'm planning to be there to help however I can.

Thank you for your prayers and love for us.

Agitated Mr. Ommm

(If you missed the update I put on August 1, I had shared it wrong on FB and it only went to one person. I think I fixed it and it's on my page. There is some good news in that post.)

Mike was quite agitated today. He is receiving more Tylenol, as I requested, so now I wonder if it is withdrawal from the medication that is being tapered down. I've been Googling it for the past hour and it seems possible. This is so frustrating and emotionally draining.  I cannot imagine what he is going through and he cannot tell us how he is feeling or why he's so uncomfortable and agitated.

He had been up since 8:00 AM, the CNA said so at 11:00 we put him back in bed. He calmed down and Mr. Omm disappeared for about 45 minutes. We held hands and I tried to talk with him, but he couldn't find any words. His eyes were scanning the room, and he tried to look at the bulletin board on the wall behind his head. I took down photos and asked him if he knew who they were. Silence, then he pointed to different people and I told him who they were. I figured he must have been tired of sitting up and needed a change of position, but soon it was time for lunch and he became quite agitated once we had him up again. Mr. Omm was very persistent and Mike was having a hard time being calm enough to chew his food well. At one point it was as if someone stuck him with a pin. Something was definitely wrong, but what?

We made it through lunch and I wheeled him outside for about 15 minutes, but it didn't help. I decided he must need to lay back down, so we headed inside. He was grabbing his head, scooting forward in his wheelchair, throwing one leg onto the bed, "ommm, omm, ommm, OMMM, OMMM". The RN brought his afternoon pills which included Tylenol and the CNA finally arrived to get him in bed. (after lunch is a very hectic time for them, patience is required) Even in bed, he did not calm down this time. I read Scripture to him, sang, handed him his Sports Illustrated, gave him water, nothing helped. I rubbed his arm, his leg, his chest - at one point he took my hand and pushed it away. He had a few seconds of quiet every now and then - maybe I was just making it worse, so after a little time, I went on and left.

My hearts cry today was "God please be merciful and let him come home to You". This is heart wrenching to see him in such distress and be completely helpless and clueless. It's hard to find joy today. "Restore to me the joy of Thy salvation" I thought as I walked out of the grocery store later. Help me to show that there is still joy in You, even when my heart is like lead.

Psalm 51:12 (ESV)

"Restore to me the joy of your salvation,

and uphold me with a willing spirit."

Chicken & Dumplings

Tuesday had several highlights.

Mike was sitting quietly at the foot of his bed in the wheelchair when I arrived. No Mr. Omm until I broke the silence. I really felt like Mike was trying to say something to me, but all that would come out was Mr. Omm. I cannot imagine how frustrating that is for him. He sort of tried to help shave, but only put the electric shaver to his chin. He seemed a bit agitated and restless - legs jiggling, shifting in the chair, rubbing his head.

OT came in and tried getting him to stand and transfer to the toilet. He did fairly well, with help. As we were getting him back into his chair, I wanted to check the boil on his back that I had noticed on Friday. The doctor started antibiotics on Monday because it was an angry red, swollen, and oozing. It looked worse on Tuesday, mainly because it is now open, oozing more, and really red. No wonder he's restless, that has to hurt. After a bandage change, Bill went in search of a cushion to put behind his back and hopefully that made it more comfortable.

Mike used his feet and motored himself all the way to the dining hall! I just provided direction and tried to keep him out of the middle of the hallway. Lunch looked and smelled yummy. We did as before, I got him started, then he took over and fed himself. Chicken & dumplings was the main course and he had 2 helpings of that. I'm not sure she was supposed to, but one of the kitchen workers was asking the staff who wanted a plate and she asked me if I'd like some too and I said "sure!" It was delicious! I didn't even think I liked dumplings, but the sauce was very flavorful. What a treat!

Mike still seemed anxious to me, so I asked his nurse if he could have more Tylenol. She gave him some and then the PT, Lynn, came along with her aide and Mike walked about 145 feet! Unlike Friday when he kept wanting to sit down every little bit, Tuesday he wanted to keep walking and Lynn had to make him sit down a couple of times when his leg started quivering. That might have also been some of his agitation - he was tired of sitting and wanted to be up and moving around. He is motivated and that's good to see, but he was obviously getting tired. As they went to put him in bed, I left for the care team meeting.

Right away, they asked me how everything was going from my perspective and if I wanted Mike to stay there long-term. Absolutely! OK, after our meeting you can speak with our financial director. Thank you, Lord! Insurance has approved another week, but since Mike is almost back to where he was pre-fall, it may be the last week that they will approve. Speech Therapy had to discharge him as of Monday, because other than upgrading his food from puree to soft, there was no further progress. The really great news is that even though insurance will stop eventually, PT and maybe OT won't! It will not be as often or long, but still 5-6 times a week, which is fantastic. I think they called it recovery therapy and I am so grateful for this.

I had written up 2 pages of notes about Mike that I hope will be helpful to the staff as they get to know him and work with him. The therapy director said she would see that it was typed up and put in his computer file so that it would be accessible to everyone. Hopefully that will happen and the staff that work with him will read it. The financial person was not available yesterday afternoon, so I will try to see her on Friday.

After the care team meeting, I returned to Mike's room to find him comfortably lying on his bed and quiet. What joy to witness this. I handed him his Bible and he began to read, not out loud, but this is still better than most post-surgery days. We had a couple of quiet times Tuesday which I believe is more relaxing for Mike, as well. He was calm.

Tomorrow afternoon at 2:30, I have an appointment at DSS to turn in necessary documents and move the Medicaid process along. Please pray for this process and that meeting tomorrow. Our case worker said I could drop off the required documentation, but I asked for a meeting hoping I can spur this on a little faster.

I am truly grateful for everyone's thoughts, prayers, comments, messages, calls, cards, etc. I actually just read some of the comments from previous posts tonight. I'm sorry I don't respond right away or sometimes not at all (that's terrible, I'm sorry!), but please know I greatly appreciate all of you who continue to care for us, pray for us, read these blogs, leave me messages here or on FB, and give me hugs when I see you in person. Y'all mean so much to me and are a huge part of our journey. I know you have helped me tremendously with your encouragement and prayers.

Thank you! I love you!