9:24pm
Praise God from whom all blessings flow!
Last night was one of our best nights in a very long time and today probably the best day we've ever had since being home from the hospital. Mike was mostly calm, and although a bit sluggish, seemed more aware and communicative. He even told me that his feet hurt. Usually I guess, depending on his actions, that there is some pain somewhere. Later in the day this turned into a fixation with his feet - we soaked them, put lotion on them, propped them up, soaked them again, shoes on, shoes off, hot, cold, and then he walked a "flight pattern" (as Keegan calls it) between the living room and kitchen stopping to look at his feet and then retracing his steps again.
Did several errands this morning and he did quite well. At Aldi, after we had checked out, our carrot bag broke open and carrots went scattering, he went back and got a replacement bag all by himself. When we got to therapy, he walked right in and hung up his coat and hat without being prompted. So the 1mg Risperdal has made a huge difference and I'm so encouraged that it hasn't zombified him, but seems to have calmed the chaos in his mind and body and allowed him to think and respond appropriately in many ways today. So happy to have a day without the physical struggles. I think yesterday's struggles to get him back to the car did a number on my back - it's been painful tonight. Therefore, I'm going to go get myself ready for bed. G'night! :-)
Monday, January 28, 2013
Sunday, January 27, 2013
Broken
WAW....What A Week...
Sunday 1/20
Mike, Keegan & Amy - tough, frantic, Keegan taking Mike out of church and carrying him down the stairs.
Me - Wonderful respite, worship, walk, freedom, phone conversations, reading, movie, ahhhh
Closing song at Chapel Hill Bible Church
You Never Let Go by Matt Redman
(http://www.youtube.com/watch?v=A9Ya7ryNob4)
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back I know you are near
And I will fear no evil, For my God is with me. And if my God is with me,
Whom then shall I fear? Whom then shall I fear?
Chorus:
Oh no, You never let go, Through the calm and through the storm
Oh no, You never let go, In every high and every low
Oh no, You never let go, Lord, You never let go of me
(You keep on giving and You never let go)
And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles, but until that day comes
We'll live to know You here on the earth (Chorus)
Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles, but until that day comes
Still I will praise You, still I will praise You! (Chorus 2x)
2006 Sparrow
Monday - Arriving home at 3 and seeing Mike through rested eyes. Sadness, where is the man I knew? He looked so lost, disheveled, unshaven, glassy-eyed. Maureen, CK caregiver had a rough time.
Tues. - Scotty's last day - he's too busy, quitting Comfort Keepers. Sad face - he was the best with Mike and most consistent. Tried my new medicine - very bad night - so much for that.
Thurs. - Appt. with Dr. G, chasing Mike in and out of the office, up and down the hall, wide-eyes of strangers, sympathetic looks and help from office staff. Increase of risperdal. Didn't seem to help, Maureen came, Mike unhappy. Come home after some errands - Maureen outside with Mike's coat looking for Mike, surprised neighbors, Mike out-of-control. Maureen leaves, Mike calms down. Physical struggles over personal care. Rough night....who is "Lily the veterinarian"? Pacing 12:30-2am
Friday - Try not giving him Inderal & risperdal (so many things were better when he first came home from the hospital - is the medicine causing this?)- cold, icy, snowy, Mike determined to go outside, but not frantic. Walk to trash, did some cleaning and laundry, watched Anne of Green Gables, played games. Too icy to go out, struggles to keep him in - no understanding. Some sleep.
Saturday - Calmer morning, careful walk to trash, scraping & de-icing the car - good stress relief, while Mike sits in the warm car, walk at the mall, hot pretzel and an Orange Julius, grocery store, home - Mike insists on a shower, goes to bed for 20 minutes. Lunch, games, walk at the park, finish Anne of GG movie. Getting him cleaned up - uncooperative, physical struggles, running water at 4 am, pacing.
Sunday 1/27 - Anxious - OK try the Inderal again - BIG mistake! Mike out-of-control, Big scene at church, stares of people, struggle to get him to car. Me - broken. OK - Was so hopeful that he'd be better without all these meds - nevermind - try the 1mg of Risperdal again. Lunch, then try making potholders on little plastic square weaving loom - he liked it and could do parts of it on his own. Carol and Ed came - Thank You, Lord! Keegan, Amy and I went out - bit of early birthday celebration for Keegan (23 on the 29th) picked up cheesecake, coffee and sat at food court, talked, prayed, shared, release - Keegan encouraged & prayed for me - he's such a support to me - Thank you, LORD!. I visited Kris afterwards - helpful comment from Kris: that maybe keeping Mike calmer will help his brain to heal better also. A bright hope to think about, instead of just feeling bad about keeping him drugged. Her little one, Andrew, made my day when he ran in and gave me a big hug! So precious. Big smile. Home...Carol doing laundry, Mike and Ed still making potholders! Fixated is much better than frenzied. Time for more meds, shower, he crashed. I write.
Psalm 27:13&14 NASB
I would have despaired unless I had believed that I would see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and let your heart take courage; Yes, wait for the LORD.
NIV - Vs. 13 I am still confident of this: I will see the goodness of the LORD in the land of the living.
Both translations are so true. Desperation can be so close to overwhelming me, if I take my eyes off of the LORD, so I will remain confident and not despair for God's goodness is evident in so many ways already and there will be more to be seen as we continue along this adventurous journey for "I belong to the Lord". Isaiah 44:5
Sunday 1/20
Mike, Keegan & Amy - tough, frantic, Keegan taking Mike out of church and carrying him down the stairs.
Me - Wonderful respite, worship, walk, freedom, phone conversations, reading, movie, ahhhh
Closing song at Chapel Hill Bible Church
You Never Let Go by Matt Redman
(http://www.youtube.com/watch?v=A9Ya7ryNob4)
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back I know you are near
And I will fear no evil, For my God is with me. And if my God is with me,
Whom then shall I fear? Whom then shall I fear?
Chorus:
Oh no, You never let go, Through the calm and through the storm
Oh no, You never let go, In every high and every low
Oh no, You never let go, Lord, You never let go of me
(You keep on giving and You never let go)
And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles, but until that day comes
We'll live to know You here on the earth (Chorus)
Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles, but until that day comes
Still I will praise You, still I will praise You! (Chorus 2x)
2006 Sparrow
Monday - Arriving home at 3 and seeing Mike through rested eyes. Sadness, where is the man I knew? He looked so lost, disheveled, unshaven, glassy-eyed. Maureen, CK caregiver had a rough time.
Tues. - Scotty's last day - he's too busy, quitting Comfort Keepers. Sad face - he was the best with Mike and most consistent. Tried my new medicine - very bad night - so much for that.
Thurs. - Appt. with Dr. G, chasing Mike in and out of the office, up and down the hall, wide-eyes of strangers, sympathetic looks and help from office staff. Increase of risperdal. Didn't seem to help, Maureen came, Mike unhappy. Come home after some errands - Maureen outside with Mike's coat looking for Mike, surprised neighbors, Mike out-of-control. Maureen leaves, Mike calms down. Physical struggles over personal care. Rough night....who is "Lily the veterinarian"? Pacing 12:30-2am
Friday - Try not giving him Inderal & risperdal (so many things were better when he first came home from the hospital - is the medicine causing this?)- cold, icy, snowy, Mike determined to go outside, but not frantic. Walk to trash, did some cleaning and laundry, watched Anne of Green Gables, played games. Too icy to go out, struggles to keep him in - no understanding. Some sleep.
Saturday - Calmer morning, careful walk to trash, scraping & de-icing the car - good stress relief, while Mike sits in the warm car, walk at the mall, hot pretzel and an Orange Julius, grocery store, home - Mike insists on a shower, goes to bed for 20 minutes. Lunch, games, walk at the park, finish Anne of GG movie. Getting him cleaned up - uncooperative, physical struggles, running water at 4 am, pacing.
Sunday 1/27 - Anxious - OK try the Inderal again - BIG mistake! Mike out-of-control, Big scene at church, stares of people, struggle to get him to car. Me - broken. OK - Was so hopeful that he'd be better without all these meds - nevermind - try the 1mg of Risperdal again. Lunch, then try making potholders on little plastic square weaving loom - he liked it and could do parts of it on his own. Carol and Ed came - Thank You, Lord! Keegan, Amy and I went out - bit of early birthday celebration for Keegan (23 on the 29th) picked up cheesecake, coffee and sat at food court, talked, prayed, shared, release - Keegan encouraged & prayed for me - he's such a support to me - Thank you, LORD!. I visited Kris afterwards - helpful comment from Kris: that maybe keeping Mike calmer will help his brain to heal better also. A bright hope to think about, instead of just feeling bad about keeping him drugged. Her little one, Andrew, made my day when he ran in and gave me a big hug! So precious. Big smile. Home...Carol doing laundry, Mike and Ed still making potholders! Fixated is much better than frenzied. Time for more meds, shower, he crashed. I write.
Psalm 27:13&14 NASB
I would have despaired unless I had believed that I would see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and let your heart take courage; Yes, wait for the LORD.
NIV - Vs. 13 I am still confident of this: I will see the goodness of the LORD in the land of the living.
Both translations are so true. Desperation can be so close to overwhelming me, if I take my eyes off of the LORD, so I will remain confident and not despair for God's goodness is evident in so many ways already and there will be more to be seen as we continue along this adventurous journey for "I belong to the Lord". Isaiah 44:5
Saturday, January 19, 2013
God will be to me what He is.
11:00am
Psalm 18:1&2, 46
"I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold."
"The Lord lives! Praise be to my Rock! Exalted be God my Savior!"
This morning I read Psalm 18. What comfort in those first verses. What terrifyingly great power is in those verses between the ones printed above! There is NOTHING too difficult for the one and only true God. God is not going to change who He is.
This reminded me of the next to last chapter in "Close to His Majesty" by David Needham, which I have wanted to share with you for some time. "GOD WILL BE TO US WHAT HE IS." Exodus 3:14, 15b "God said to Moses, "I AM WHO I AM. This is what you are to say to the Israelites: 'I AM has sent me to you.'" "...This is my name forever, the name by which I am to be remembered from generation to generation." I Thessalonians 5:9 "For God has not destined us for wrath, but for obtaining salvation through our Lord Jesus Christ." "Because of Jesus, our God is now free to be to us Everything-that-He-is, without wrath! This is His name forever!" Needham goes on to illustrate by saying suppose you are in a hospital for the first time awaiting surgery, a man with a black bag comes in and tells you everything will be fine, no worries and then proceeds to the TV to repair it; another man walks in, tells you the same thing, but tells you he is the doctor who will be performing the surgery. "The same words--but oh, what a difference! No matter how wonderful the promises are--it is the character of the One who speaks them which makes all the difference!" John 14:27 "Peace I leave with you; My peace I give to you; not as the world gives, do I give to you. Let not your heart be troubled, nor let it be fearful." Isaiah 41:13 "For I am the Lord your God, who upholds your right hand, Who says to you, 'Do not fear. I will help you.'" "No, it isn't just anyone who says these words. It is "I AM WHO I AM": The-One-who-will-be-to-me-what-He-is." So much great stuff in this chapter, but you'll just have to read the book. One last thing though: "At a time of deep personal agony, the pioneer missionary Hudson Taylor received a letter from a friend who wrote the following words...: 'But how to get faith strengthened? Not by striving after faith, but by resting on the Faithful One.' That's it! Trust--faith--is not something we try to pump up enough to carry the weight of our needs........It is simply affirming--and resting in--the faithfulness of God to be to me what His promises say He will be. And what is the basis for such restful confidence? His NAME. The very name of God."
Isn't that fantastic! I love how David Needham illustrates such deep truths. Something that I just read right over he is able to show how rich and deep a truth it is, and what an impact it can make on my trust and rest in God when I understand the full meaning of God, the great "I AM". One focus - GOD. That's why the verses at the top of the blog CAN have such meaning, because of the ONE they are talking about. He will not be moved, I am secure when I stay with Him. Shout it out! GLORY! PRAISE YOU, GOD! THANK YOU, JESUS!
On Monday afternoon, I took Mike to our primary care doctor. We saw the nurse practitioner, and although Mike would hardly sit still, she could hear fluid in his right lobe so put him on antibiotics. I think this week could be characterized by our wedding vows of "for better or for worse". We had some really great, calm, and fun times and some really not great, or fun struggles. I was able to meet with Dr. Gualtieri by myself this week and talk through more than is possible when Mike is there. We are trying yet another new medicine, to see if that will help calm Mike down without making him a zombie. Dr. G also prescribed a med for me to try to take the edge off of some of the stress. About Thursday, I started feeling a bit sick too, but have kept drinking Emergen-C, taking Nyquil and Dayquil to try to keep it at bay.
I praise God and thank Keegan, Amy, Maureen, and Zack for taking care of Mike this weekend so I can have a long respite. Several of my family were going to meet at my sister, Gayle's house in northern Virginia, but that did not work out. Since I already had help lined up and REALLY needed a break, I came to Carol & Ed's house and am enjoying a very quiet, alone time. Ed's father, Dick Gaunt passed away this past week, so they are in NJ - please remember Ed's family, especially his Mom, in your prayers.
Another huge praise and weight off my shoulders is I have an accountant to do our taxes this year! And not only that, he is someone I know. God is amazing! Before Christmas, a friend called to see how we were doing and during the course of the conversation, she reminded me of a man who used to live in Fayetteville and was a member of Christus Victor Lutheran where I worked. He always helped me with the church financial stuff and then his family moved to Raleigh. Even after he moved, he was available by phone to help me as needed. So we talked this week, I've started gathering up my papers and we'll get together soon. Yay!
So many of you have been such a blessing to me in such unexpected ways. Thank you so very much for all the cards, financial gifts, prayers, calls, e-mails, thoughts, visits, food, practical items, and other gifts. If you've ever read the book "The 5 Love Languages", my love-language is gifts and that has been a very bright spot for me throughout this difficult adventure--the fact that you have not forgotten us and continue to go out of your way to do thoughtful, sacrificial, and encouraging things for us and me in particular. You definitely help me get through those tough days. This week I received a beautiful bracelet with the word "miracles" on it from a dear friend in Canada. What a wonderful visual reminder to continue to pray for a miracle in Mike's life and knowing that others are praying that also. Thank you, Elke. Other gifts - my Mom working a puzzle with Mike at the farm over Christmas; my Dad taking Mike for a drive, Caleb and Keegan occupying Mike during our Christmas time together; family members playing pool with Mike; Ed and Carol coming over to help in whatever way they can. Each and every gift is priceless to me. THANK YOU!
Psalm 18:1&2, 46
"I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold."
"The Lord lives! Praise be to my Rock! Exalted be God my Savior!"
This morning I read Psalm 18. What comfort in those first verses. What terrifyingly great power is in those verses between the ones printed above! There is NOTHING too difficult for the one and only true God. God is not going to change who He is.
This reminded me of the next to last chapter in "Close to His Majesty" by David Needham, which I have wanted to share with you for some time. "GOD WILL BE TO US WHAT HE IS." Exodus 3:14, 15b "God said to Moses, "I AM WHO I AM. This is what you are to say to the Israelites: 'I AM has sent me to you.'" "...This is my name forever, the name by which I am to be remembered from generation to generation." I Thessalonians 5:9 "For God has not destined us for wrath, but for obtaining salvation through our Lord Jesus Christ." "Because of Jesus, our God is now free to be to us Everything-that-He-is, without wrath! This is His name forever!" Needham goes on to illustrate by saying suppose you are in a hospital for the first time awaiting surgery, a man with a black bag comes in and tells you everything will be fine, no worries and then proceeds to the TV to repair it; another man walks in, tells you the same thing, but tells you he is the doctor who will be performing the surgery. "The same words--but oh, what a difference! No matter how wonderful the promises are--it is the character of the One who speaks them which makes all the difference!" John 14:27 "Peace I leave with you; My peace I give to you; not as the world gives, do I give to you. Let not your heart be troubled, nor let it be fearful." Isaiah 41:13 "For I am the Lord your God, who upholds your right hand, Who says to you, 'Do not fear. I will help you.'" "No, it isn't just anyone who says these words. It is "I AM WHO I AM": The-One-who-will-be-to-me-what-He-is." So much great stuff in this chapter, but you'll just have to read the book. One last thing though: "At a time of deep personal agony, the pioneer missionary Hudson Taylor received a letter from a friend who wrote the following words...: 'But how to get faith strengthened? Not by striving after faith, but by resting on the Faithful One.' That's it! Trust--faith--is not something we try to pump up enough to carry the weight of our needs........It is simply affirming--and resting in--the faithfulness of God to be to me what His promises say He will be. And what is the basis for such restful confidence? His NAME. The very name of God."
Isn't that fantastic! I love how David Needham illustrates such deep truths. Something that I just read right over he is able to show how rich and deep a truth it is, and what an impact it can make on my trust and rest in God when I understand the full meaning of God, the great "I AM". One focus - GOD. That's why the verses at the top of the blog CAN have such meaning, because of the ONE they are talking about. He will not be moved, I am secure when I stay with Him. Shout it out! GLORY! PRAISE YOU, GOD! THANK YOU, JESUS!
On Monday afternoon, I took Mike to our primary care doctor. We saw the nurse practitioner, and although Mike would hardly sit still, she could hear fluid in his right lobe so put him on antibiotics. I think this week could be characterized by our wedding vows of "for better or for worse". We had some really great, calm, and fun times and some really not great, or fun struggles. I was able to meet with Dr. Gualtieri by myself this week and talk through more than is possible when Mike is there. We are trying yet another new medicine, to see if that will help calm Mike down without making him a zombie. Dr. G also prescribed a med for me to try to take the edge off of some of the stress. About Thursday, I started feeling a bit sick too, but have kept drinking Emergen-C, taking Nyquil and Dayquil to try to keep it at bay.
I praise God and thank Keegan, Amy, Maureen, and Zack for taking care of Mike this weekend so I can have a long respite. Several of my family were going to meet at my sister, Gayle's house in northern Virginia, but that did not work out. Since I already had help lined up and REALLY needed a break, I came to Carol & Ed's house and am enjoying a very quiet, alone time. Ed's father, Dick Gaunt passed away this past week, so they are in NJ - please remember Ed's family, especially his Mom, in your prayers.
Another huge praise and weight off my shoulders is I have an accountant to do our taxes this year! And not only that, he is someone I know. God is amazing! Before Christmas, a friend called to see how we were doing and during the course of the conversation, she reminded me of a man who used to live in Fayetteville and was a member of Christus Victor Lutheran where I worked. He always helped me with the church financial stuff and then his family moved to Raleigh. Even after he moved, he was available by phone to help me as needed. So we talked this week, I've started gathering up my papers and we'll get together soon. Yay!
So many of you have been such a blessing to me in such unexpected ways. Thank you so very much for all the cards, financial gifts, prayers, calls, e-mails, thoughts, visits, food, practical items, and other gifts. If you've ever read the book "The 5 Love Languages", my love-language is gifts and that has been a very bright spot for me throughout this difficult adventure--the fact that you have not forgotten us and continue to go out of your way to do thoughtful, sacrificial, and encouraging things for us and me in particular. You definitely help me get through those tough days. This week I received a beautiful bracelet with the word "miracles" on it from a dear friend in Canada. What a wonderful visual reminder to continue to pray for a miracle in Mike's life and knowing that others are praying that also. Thank you, Elke. Other gifts - my Mom working a puzzle with Mike at the farm over Christmas; my Dad taking Mike for a drive, Caleb and Keegan occupying Mike during our Christmas time together; family members playing pool with Mike; Ed and Carol coming over to help in whatever way they can. Each and every gift is priceless to me. THANK YOU!
Monday, January 14, 2013
Surgery postponed
12:10p (Decided to post the time, when I remember, because I can't figure out how to correct it on the blog settings. Guess they don't know where Raleigh, NC is located!)
Unfortunately Mike's surgery had to be postponed due to his congestion. I'm bummed about it, but as I read in a devotion lately, I have to remember to say "Jesus I trust You." no matter what circumstance or issue pops up. The surgery has been rescheduled for February 12, four weeks away. I'll just have to keep a close watch on the area and if it starts to look red or swollen, take him to the wound care clinic.
God is blessing us with a calm day today for which I am MOST GRATEFUL; yesterday was a storm! This morning Mike wanted to take out the trash all by himself, so I let him. (The trash receptacles are on the other side of the apartment complex.) After he came back from doing that, he wanted to take out the recycle which is in the same area. He did both seemingly just fine. Whether they were put in the right place or not, I don't know, but he was quite pleased with himself and I praised him highly. After that, he sat and read a couple of magazines for a while, highlighting different things he thought I needed to read. Then he wanted to go for a walk around the neighborhood and "get in touch with nature". LOL! This was huge also, because the last few times I've tried to get him to walk around this area, it has been a real struggle and he would get so agitated and upset. Saturday we tried, but we had to get back. I asked if he was afraid of something and he said "ghosts". ???? He and Galen had started a puzzle on Friday and it was driving him crazy Saturday morning, wanting to work on it. I covered it with a trash bag at breakfast so that he could eat, but afterwards we worked on it for almost 2 hours. That's when I decided we needed a break and could go for a walk. When we got back to the apartment after our attempted walk, he started right back into "help me with the puzzle". I told him Carol was coming later and would help him, so asked him to find something to read or play a game on his iPad. I needed to work on mail, bills, e-mails, etc. so I turned on some music, locked myself in the office/spare room to do that and he paced and repeated. Then started saying "I'll go on a hunger strike, if you don't help me!" "You don't believe me!" "I'll go on a long trip!" "I'll pack up the house!" "I've packed your diamonds!" (hard to do since the only one I have is on my finger!) I would come out of the room every now and then and at one point, he had the suitcase out and had all my jackets and jewelry in it, plus his Bible and the contents of a small basket that sits on the hutch. I had to laugh.
Carol arrived as we were finishing lunch, and she and Mike worked on the puzzle for a couple more hours. At some point, he did get up and started unpacking the suitcase and let Carol help him. I was able to go through a lot of papers and some e-mails and then we finished the puzzle together and headed out to see the new NCSU library. It's huge and has lots of interesting seating and natural light. Not that many visible books, but there is a bookbot that will go and get books for you. Mike was rather antsy there - as we were leaving, he said "I don't want to live here!" he thought I was checking it out to see if it was some place he could live. Oh my! Carol treated us to Taco Bell on the way home and then Mike was ready for a shower and bed.
A recurring conversation that I don't think I've shared is this: Mike says: "you're my husband." Me: "No, I'm your wife." Mike "I'm your wife." Me "You would say 'I'm your husband.'" Mike "I'm your husband." Me: "Right!" then it usually starts all over again. Last week we went around a couple of times and then he said "We're married!" haha!! That's the best way to say it!
Well, after a good walk around the neighborhood this morning, he has sat and played Fruit Ninja's on his iPad until now. How nice. :-) Think I better make him a doctor's appointment, he is so congested. Have a great day everybody.
Unfortunately Mike's surgery had to be postponed due to his congestion. I'm bummed about it, but as I read in a devotion lately, I have to remember to say "Jesus I trust You." no matter what circumstance or issue pops up. The surgery has been rescheduled for February 12, four weeks away. I'll just have to keep a close watch on the area and if it starts to look red or swollen, take him to the wound care clinic.
God is blessing us with a calm day today for which I am MOST GRATEFUL; yesterday was a storm! This morning Mike wanted to take out the trash all by himself, so I let him. (The trash receptacles are on the other side of the apartment complex.) After he came back from doing that, he wanted to take out the recycle which is in the same area. He did both seemingly just fine. Whether they were put in the right place or not, I don't know, but he was quite pleased with himself and I praised him highly. After that, he sat and read a couple of magazines for a while, highlighting different things he thought I needed to read. Then he wanted to go for a walk around the neighborhood and "get in touch with nature". LOL! This was huge also, because the last few times I've tried to get him to walk around this area, it has been a real struggle and he would get so agitated and upset. Saturday we tried, but we had to get back. I asked if he was afraid of something and he said "ghosts". ???? He and Galen had started a puzzle on Friday and it was driving him crazy Saturday morning, wanting to work on it. I covered it with a trash bag at breakfast so that he could eat, but afterwards we worked on it for almost 2 hours. That's when I decided we needed a break and could go for a walk. When we got back to the apartment after our attempted walk, he started right back into "help me with the puzzle". I told him Carol was coming later and would help him, so asked him to find something to read or play a game on his iPad. I needed to work on mail, bills, e-mails, etc. so I turned on some music, locked myself in the office/spare room to do that and he paced and repeated. Then started saying "I'll go on a hunger strike, if you don't help me!" "You don't believe me!" "I'll go on a long trip!" "I'll pack up the house!" "I've packed your diamonds!" (hard to do since the only one I have is on my finger!) I would come out of the room every now and then and at one point, he had the suitcase out and had all my jackets and jewelry in it, plus his Bible and the contents of a small basket that sits on the hutch. I had to laugh.
Carol arrived as we were finishing lunch, and she and Mike worked on the puzzle for a couple more hours. At some point, he did get up and started unpacking the suitcase and let Carol help him. I was able to go through a lot of papers and some e-mails and then we finished the puzzle together and headed out to see the new NCSU library. It's huge and has lots of interesting seating and natural light. Not that many visible books, but there is a bookbot that will go and get books for you. Mike was rather antsy there - as we were leaving, he said "I don't want to live here!" he thought I was checking it out to see if it was some place he could live. Oh my! Carol treated us to Taco Bell on the way home and then Mike was ready for a shower and bed.
A recurring conversation that I don't think I've shared is this: Mike says: "you're my husband." Me: "No, I'm your wife." Mike "I'm your wife." Me "You would say 'I'm your husband.'" Mike "I'm your husband." Me: "Right!" then it usually starts all over again. Last week we went around a couple of times and then he said "We're married!" haha!! That's the best way to say it!
Well, after a good walk around the neighborhood this morning, he has sat and played Fruit Ninja's on his iPad until now. How nice. :-) Think I better make him a doctor's appointment, he is so congested. Have a great day everybody.
Sunday, January 13, 2013
Mike has a cold
Really need everyone's prayers. Mike's surgery, to try to pull the pressure sore together from the inside, is scheduled for this Tuesday, Jan. 15, and yesterday he came down with a cold. Has a very stuffy nose and a bit of a cough. I just hate the thought of having to postpone this surgery since we've already waited a month for it to happen. He must have started feeling poorly earlier this week, because he was going to bed between 6 and 7 - just could not keep him up. I've been so tired, that most nights have been in bed about an hour after him. Thursday I met Keegan at the park for a sack lunch and chance to talk, and then I took some time just for me. Walked for a while and then rented a paddle boat and paddled out to the middle of Lake Johnson, closed my eyes, leaned back, and just floated and enjoyed the warm, sunny day for 1/2 hour. Later I enjoyed reading one of The Adventures of Sherlock Holmes and Friday I met with Liz, who is a caregiver for her mom, and we enjoyed talking for a couple of hours at a lively bakery. Today I've had a little bit of a cough, so hope I'm not going to get sick too. Really appreciate the prayers. G'night.
Tuesday, January 8, 2013
Drumpy Gus
Just had to share a "funny" from this afternoon. Scotty came from 1-4 today. When he arrived, we were still eating lunch...well, I was still eating, Mike was done (he inhales his meals). So while I finished, we played Blokus. After the game, I went into the spare bedroom/office to make some calls and Scotty wanted to take Mike to play basketball, Mike wouldn't go, so they ended up driving to a park and taking a walk. At 4 Mike comes in and says "I did not have fun!" Scotty: "That's not what you said 5 minutes ago." After Scotty left, I asked Mike, in a funny voice, if he was just a "grumpy gus" today and he started smiling and saying "drumpy gus", then I started poking/tickling him and calling him a grumpy gus and he started laughing and repeating "drumpy gus". We had a fun time with that and enjoyed the light moment. I'm so thankful to God for the bright spots and very thankful for Galen and Scotty this week. Am getting lots of things marked off my list and even took a nice brisk walk all by myself yesterday.
Pray for Mike
I don't know how Mike's body can handle so much anxiety and agitation. I cannot imagine what he is going through or feeling or what his mind is doing even with medication. Please be in special prayer for him today. This morning he wanted out of the apartment, then when I was finally ready and came out, he would not walk with me to take the trash and only wanted back into the apartment. Went to the park to walk, barely got started and he wanted back in the car. We did end up walking when I wouldn't let him back in the car. He's just so restless, but can't settle to do much.
I'm mulling over some ideas of how to get Mike doing some sort of work and options for our future. Appreciate prayers concerning this as well. I also need to try to get us in a better daily routine - there are just so many variables that make this difficult, but there are things I can do to give him more stability. Pray that I will be disciplined to make this happen.
Thank you.
I'm mulling over some ideas of how to get Mike doing some sort of work and options for our future. Appreciate prayers concerning this as well. I also need to try to get us in a better daily routine - there are just so many variables that make this difficult, but there are things I can do to give him more stability. Pray that I will be disciplined to make this happen.
Thank you.
Sunday, January 6, 2013
How Firm a Foundation
Since Friday, life has been quite challenging and I have felt like an elephant was sitting on my chest. I have prayed and begged God to speak to me, give me guidance, wisdom, patience, peace, just some sort of word from the Lord to me. I don't doubt that He is with us, loves us, has a plan for us, and a hope and a future, but I have about lost every ounce of patience and just wanted some reassurance now. This morning, I just couldn't decide where to go to church and was asking for guidance as we drove out of the apartment complex. I don't feel like we will be in this area for very long, so have been hesitant to really look for a "home" church while here. I feel so needy and somehow didn't feel it would be right to attach ourselves to a church where we probably won't be able to participate and help them much, but desperately need a church family close by for support, and for us to get involved with in some capacity. Trinity was just too big for me, Mike wasn't comfortable with the home church, Keegan and Amy's church is geared more to college and young families, so we needed something in-between. Back when we had home health, Dusti, RN invited us to her church, Ephesus Baptist, and we visited the 8:30 am service one time a few months back. Today we actually headed out to go to Keegan's church and at the stop sign I decided to go the opposite direction and we revisted Ephesus at the 11am service. It was definitely God-appointed. The second song had me in tears and was my word from the Lord.
How Firm a Foundation
How firm a foundation, ye saints of the Lord,
is laid for your faith in His excellent Word!
What more can He say than to you He hath said,
To you who for refuge to Jesus have fled?
"Fear not, I am with thee' O be not dismayed,
For I am thy God, and will still give thee aid;
I'll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, omnipotent hand."
"When through fiery trials thy pathway shall lie,
My grace, all sufficient, shall be thy supply:
The flame shall not hurt thee; I only design
Thy dross to consume, and thy gold to refine."
"The soul that on Jesus hath leaned for repose
I will not, I will not desert to his foes;
That soul, though all hell should endeavor to shake,
I'll never, no, never, no never forsake!"
(emphasis mine)
Verse 1 - He has already given me all I need in His Word, what more does He need to say?
Verse 2 - I started this week, trying for Mike and I to memorize a verse a week. I had Mike type it into his "notes" section on his iPad, so we can review it easily. Our verse this week is Isaiah 41:13 "For I am the Lord your God who upholds your right hand, Who says to you, 'Do not fear, I will help you.'"
Verse 3 - Dross rhymes with albatross - a very large bird. Don't know why I thought of that just now, but it made me smile and reminded me of an old Disney movie where an animal character is running around trying to get the runway ready for the jumbo bird coming in. I think I'm running around trying to dodge the flame that is meant to consume my large amount of dross - not to hurt me, but to refine me and leave me shiny so that God's reflection alone can be seen.
Verse 4 - The best reassurance ever. No matter what Satan may throw at me in an effort to shake my faith and make me feel like a failure, as long as I have Jesus as my refuge and lean on Him, He will not, will not desert me and never, no, never, no, never forsake me.
So even though He has said all He needs to say in His Word, He still loves us enough to speak to us individually, in a way that is clear and personal in our time of desperate need. As I think back, I realize that often it is through songs that I hear the Lord speaking most intimately with me. I also realized today that the church, wherever we are, is to be our family, even if we cannot give back much right now or may never be able to give back to whatever church we participate in at this time. That is the body of Christ. Kris from the home church was definitely Jesus' hands and feet to me this week. Friday, after we had exchanged e-mails, she unexpectedly brought supper, some movies, a puzzle and sat and talked with us for a while. She helped me get through that day when I needed a friend the most. This morning, as tears flowed while singing, a gentle hand was laid on my shoulder and the kindness of the woman behind me, was a balm to my soul. Ephesus is predominately an older congregation, but the people were warm and welcoming and I believe it will be a good fit for our time here. They are having a gospel and bluegrass band tonight and we plan to return to hear them.
Without going into all the details of our struggles, just imagine that you have someone hovering over you from the time they are awake until they go to bed, often repeating the same phrase over and over and over, he becomes extremely anxious often and especially if I am out of sight or not helping him do something constantly. Often sounds angry, talks loudly, and there are often messes to clean up. Sometimes there are physical struggles in the middle of the night, because he thinks it is time to get up and get dressed. The government doesn't provide any assistance for respite because he "only has TBI", our file was sent from our case manager at DDB to Maxim on Dec. 17 to get some personal assistance during the day, but as of Jan. 3, Maxim had not looked at it. Our case manager with Developmental Disability Bridging has changed twice now. Gateway Clubhouse may not be able to accept him due to his behavior and insurance doesn't pay for residential programs. It sometimes feels like we are in a very large crack in the system.
Regarding the wound, I guess I was over-hopeful. Tara also thought it felt smaller under the skin, but when she checked previous measurements, there was a minuscule difference. Surgery is scheduled for the 15th to pull it together and insert a drain. The outside is closing again, but they tell me not to worry about it.
On the bright side, Mike really enjoyed the Jones family gift exchange and has especially enjoyed the hat Daddy gave him. (Daddy gave hats to my brother, Hugh, and all the sons-in-law. From L-R Daddy, Ed, Tom, Hugh, Mike G., Mike R.) Mike had somewhat of a conversation with his Mom on New Year's Day as he was watching the Nebraska game. First time I've heard him do that. Through Comfort Keepers, I have hired someone to be here M-F for at least 3 hours a day. Pray that Mike will be cooperative with the new guy, Galen (M,W, F) and Scotty (T, Th). I put out an SOS to Keegan and Amy today and they came and took him for a walk and played a game with him so I could type this, but they need to get going so I must go.
Thank you for your love and prayers.
Subscribe to:
Posts (Atom)