Golden Pond a No Go

Psalm 84:12 

O LORD Almighty, blessed is the man who trusts in You.

To be honest, I'm not feeling overly blessed right now. Yes, I know, there are many things to be thankful for and blessings all around that I can name, but the main thing I am looking for continues to evade us. Healing for Mike or a good placement for him. Yet, God says that we will be blessed when we trust in Him so I hold on and fight the discouragement. I seem to have misplaced my garment of praise tonight and the natural me wants to bury my head in the sand. 

When Lori at Golden Pond realized that Emily had not even applied for funding for Mike yet, she went on and contacted others who had asked about her available bed. She had two people interested that already had everything in order and could come immediately. I understand. After talking with her, we followed her over to their other home which is run by their daughter. This home has 2 beds, but it is very close to a busy road and I don't believe it would be best for Mike. The home has alarms on the doors, but Mike can be quick and it just looked too dangerous. Lori did tell us of some other possibilities that I will check into next week.

I am also feeling pressure from District 19 about available finances and I need to contact our lawyer for advice. There are so many rules and regulations, criteria and eligibility and I need help to make the right decisions. It's overwhelming. 

So...let me see if I can find my garment of praise and put it on....

I praise God for a gorgeous fall day today.

I praise God for my sweet Mama that rode around with me today and kept me company.

I praise God for kettle corn made by Coley and having a chance to leisurely chat with her.

I praise God for calves that just make me feel loved for no apparent reason, wanting to suck on my arm, hat, shirt, lick my face, whatever they can get hold of.

I praise God for the sound the sheep make, and the funny baby pigs.

I praise God for family that opens their homes to me and allows me to make it my own while I'm there.

I praise God for my good health, yoga stretches that keep my back from hurting so much, walking on a country road on the farm, and zinnias that are still blooming.

I praise God that the little golden kitten let me pet it today.

I praise God that my car runs well.

I praise God for 2 great sons, their precious wives and our granddaughter and soon a grandson.

I praise God I have an older brother and 3 older sisters and that we enjoy being together.

I praise God for the laughter I hear outside right now. (corn maze actors)

I praise God for leftovers.

I praise God for His Word.

I praise God for Jesus and the Holy Spirit.

I praise God for good friends.

I praise God for hugs from my Dad.

I praise God for Mike's family and their love and support.

I praise God for the staff at CSH who cares for Mike.

I praise God for this garment of praise that has replaced the spirit of heaviness.

I praise God!

Phone calls, emails, hopes and prayers

Today I am thankful for Bluetooth technology that allowed me to talk with Emily at District 19 while driving home from NC. (Last night I had the privilege of spending time with my friend, Kristin, and her kids in Greensboro and finished my trip home today.) Emily was calling to tell me that there will be a meeting tomorrow to discuss a possible DAP funding plan for Mike. Honestly, I do not understand how there is any money for Mike since previously I was told it was all already earmarked for other people. She tried to explain it to me, but truly it didn't make sense to me, so I am just trusting her and being thankful it's not a lost resource yet.  She called to see what Mike's current income sources were and what portion of those could be used to supplement any DAP funding that might be available. She is really trying to get him funded so that he can go to Golden Pond.

Lori from Golden Pond went to see Mike yesterday and Mike is excited about the possibility of going there. My Mom and I are going to go visit Golden Pond tomorrow. I visited with Mike tonight and he prayed that it would be God's will for him to go there. Before I left we prayed together asking the Lord to provide the funding necessary for Mike to go where God wants him to go. If that is Golden Pond, it needs to happen soon. Lori has others asking about the 1 room she has available, so the funding is a deciding factor. Please, join with us that God's will be done and if this is the right place, that the meeting tomorrow will result in the necessary funding.

As I drove down to see Mike tonight, tension started to build between my shoulder blades. All of this up and down stuff is stressful, plus it's never easy to see Mike in this type of facility. I wondered if he would be upset that I had been gone, but he never mentioned it. We had a good visit, but it is heart-breaking. He can be so sweet and child-like and I just want to wrap him up and bring him home. Want him to have the comforts of familiarity, favorite foods, family. He has lost so much more than I have. I refrain from telling him all that I do because I don't want to rub salt in the wound. Yet, he's so.....I'm struggling to know how to describe him.....he's so blank, or unaware, or self-absorbed that it doesn't seem to matter what I tell him. It's hard to explain. Tonight he got upset a couple of times - fretting about his supper and snack money - reasoning with him doesn't work and he only gets louder, so the best is to abruptly change the subject, play a game, or some other distraction. This works for a time, until the thought resurfaces and then we go through the cycle again.

Tonight he was telling me about exercising and that he was up front with the leader. I said is that because of your Physical Education background? Mike said "It's because I'm a smart guy." and then he grinned real big! LOL!

The social worker said he's been harder to redirect and has been "targeting" some of his peers. Not aggressive just.....annoying. Like telling others to take their medication, taking their seat when they stand up, etc. I think it's an attention thing. He seems to do well when he's getting plenty of attention, but when left to his own, he gets into mischief or repeats or tries to get out. Same as when he was home. So, although there are moments when I want to bring him home, I know I just can't. It took 3 people to redirect him one day they said. He can be very stubborn and willful and overpowering.

Please, please pray that God makes a way for a great placement for Mike. Golden Pond would be so accessible for me to continue to be in his life as much as possible and is much less costly than the TBI specific facilities, is a home, not an institution, and really is our only hope at the moment. This is a very important meeting tomorrow. God is in control. Praying, seeking and trusting.

Garment of Praise

Isaiah 61:1-3 (NIV)

The Spirit of the Sovereign LORD is on me,

Sunrise over the mountains
from Viv & Mike's backyard.

because the LORD has anointed me to preach good news to the poor. He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the LORD's favor and the day of vengeance of our God, to comfort all who mourn, and provide for those who grieve in Zion--to bestow on them a crown of beauty instead of ashes, the oil of gladness instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the LORD for the display of His splendor.

About 2 weeks ago, the devotional page I read in C. H. Spurgeon's book Beside Still Waters: Words of Comfort for the Soul reminded me that "We may come sorrowing, but He puts 'a garment of praise for a spirit of heaviness' on us." Plus, "Let your spirit be joyful in God your Savior. 'The joy of the LORD is your strength' (Nehemiah 8:10), and no fiend of hell can make progress against you." Praise is a wonderful way to lift our spirits when it feels like the weight of our world is on our shoulders. It helps us remember that it is not our burden to bear anyway, because Jesus told us that we are to take His yoke upon us and that His yoke is easy and His burden is light. Matthew 11:30

Beef burgundy - delicious!

This past weekend, my sisters and their spouses were a true "garment of praise" from God wrapped round about me. I came to Vivian & Mike's last Wednesday and am leaving today. Vivian and I have enjoyed little outings to Asheville and Black Mountain, walking, decorating, and doing small projects. Gayle & Tom, Carol & Ed all arrived on Friday afternoon and the festivities really kicked off. "Chef Mike", Vivian's husband cooked impressive (see photo) and delicious

Ahhh, relaxation

meals and there were serious talks, fun chatter, laughter and relaxation.  Viv & Mike live in a gorgeous location on the side of a mountain and it has been a joy to sit by the fire pit on their deck and admire the view. Here are some photos of our weekend.

Panoramic view from their deck.

Cloudy morning view

Sisters! Gayle, Vivian, Carol & me.

Kerry's sticks were

essential!

Saturday, with our cousin, Kerry's walking sticks in hand, we took a hike to Catawba Falls in Old Fort, NC. It was a beautiful, sunny and slightly cool day; perfect for hiking and not a difficult hike. The only catch was crossing the stream 3 times and getting our feet wet, well some of us did, that is. :-)

In back: Tom, Ed, Vivian,
In front: Mike, Carol, Gayle, me

Waterfall was well worth

wet feet

After our hike, we drove to Silver Fork Vineyard & Winery and enjoyed listening to a live band. For dinner, we headed to Asheville and ate at a restaurant called Storm. It was an unusual menu. Viv ordered the brussel sprouts appetizer which was delicious and Ed ordered the pigs ears appetizer which we all tried and thought were disgusting - after one bite, it stuck to my teeth and took at least 10 minutes to get rid of! Makes a great story and I can say I tried them....once! I played it safe and had steak filet for my meal which was delicious.

While Vivian was at school yesterday morning, I read the Medicare booklet and completed the Initial Enrollment Questionnaire online for Mike. Monday I received an email from District 19 letting me know that the DAP funding has now been released; however, there is only $44,000 left for the fiscal year and it is already earmarked for current DAP plans, so there is no money for Mike through that until possibly the next fiscal year. That's discouraging because last week Emily at District 19 had sent me an email with information about a home in Powhatan called Golden Pond (only about 40 minutes from the farm). On Friday I spoke for almost an hour with the owner of the home and became very hopeful that this might work out if the funding through DAP came available. This home is $66,000 a year versus the $160,000+ for the facility in Virginia Beach. Trusting God to please show us and tell us great things we cannot search out on our own.

$3.33, 3:33 AM

Wow! Where does time go? I started this blog several weeks ago and have not taken the time to complete it. Writing every few days would make sense, but.....

Shortly before Mike went to CSH, I heard a song, "Need You Now. (How Many Times.)" by Plumb. The words could so easily be my own that I feel sure Plumb has been through some very trying times herself. Here are the lyrics:

PLUMB LYRICS - "Need You Now (How Many Times)"

Well, everybody's got a story to tell

And everybody's got a wound to be healed

I want to believe there's beauty here

'Cause oh, I get so tired of holding on

I can't let go, I can't move on

I want to believe there's meaning here

How many times have you heard me cry out

"God please take this"?

How many times have you given me strength to

Just keep breathing?

Oh I need you

God, I need you now.

Standing on a road I didn't plan

Wondering how I got to where I am

I'm trying to hear that still small voice

I'm trying to hear above the noise

How many times have you heard me cry out

"God please take this"?

How many times have you given me strength to

Just keep breathing?

Oh I need you

God, I need you now.

Though I walk,

Though I walk through the shadows

And I, I am so afraid

Please stay, please stay right beside me

With every single step I take

How many times have you heard me cry out?

And how many times have you given me strength?

For several days, the refrain stayed in my head. God is faithful and He does give strength to keep breathing and keep trusting Him. Sometimes that's all we can do.

The meeting with the Attorney went extremely well. He is a Christian and extremely knowledgeable about elder law and all that entails as related to looking for long-term placement. As it turns out, since Mike is receiving LTD through the NC Retirement System which will automatically switch to Service Retirement at age 65, his retirement account cannot be viewed as accessible cash. It is strictly on a monthly basis from here on out. Therefore, we are already poor enough to apply for Medicaid, BUT since Mike is in a State facility, we cannot apply until we find an appropriate facility that will take him.

Mike is doing about the same at CSH as he was at home. He had a couple of weeks of being more calm, but last week (Oct. 8) started to be hard to redirect again. Dr. Ebeling is going to wait a bit before tweaking medication again. For the most part, Mike seems to be content at Central State. Several times I've gone to visit and he has been the one to cut the visit short. I always bring him some sort of snack and reading materials. This is how most visits have been going lately:  Mike comes in saying "no, no, no"  or is a little bit antsy then sits down and starts to eat his snack, settles down and we have a good visit, he is mostly clear and can tell me about the activities he's been doing. After anywhere from 10 minutes to a half an hour, he starts to get up and says something like "well, I have to get back to them" and he heads back to the ward. It seems that the sameness of routine, everyone doing basically the same thing that he is, the confinement and structure is actually a comfort and security to him. Occasionally he'll ask about coming home, but he seems to be doing well and better than I expected. The staff are very caring and he is in a class routine at the Treatment Mall Monday through Friday, so he does not stay in the same building or space all the time.  Here is an excerpt of an email I received on October 1st from the Rehab coordinator.

"He has had good participation and interacts well with group facilitators and his peers.   One of his groups has an exercise part at the very beginning and he was able to exercise along with the DVD with some modifications to some of the exercises. He was able to follow directions and participated well in the various activities. His groups focus on social interaction, participation as well as cognitive skills such as memory and attention/focus. One facilitator mentioned that he repeats himself frequently and can be loud at times but was easily re-directed. In yesterday afternoon’s group he participated well in various games. Towards the end of the session they played Uno. He took the lead at times with explaining rules and keeping up with who’s turn it was etc. Towards the end he seemed to get a little frustrated with some of the other clients who needed more staff assistance because they were having a little difficulty playing. He was easily directed and was able to continue playing. He later began saying “no, no, no” and was unable to say what was going on. Staff talked to him and he was able to remain  in group for the rest of the session.  He has not demonstrated any inappropriate behavior."

As I said earlier, he became harder to redirect last week, much like the cycle we've seen over the past 2+ years. New medication seems to help and calm for a time, then the erratic behavior comes back again.

A couple of weeks ago 3 representatives from NRLC (Neurological Rehabilitation Living Centers) in Virginia Beach came and evaluated Mike. They think he would fit well with their program and I think Mike would love it. Unfortunately, it is somewhere between $450-$550/day. If the DAP (Discharge Assistance Project) funding wasn't frozen, it might be able to help significantly with the cost, but no one knows when that funding will be available again. Also, NRLC does not take Medicaid. Thus, NRLC seems to be well out of reach, but anything is possible with God. There may be other funding sources, or another similar facility that does take Medicaid. After the initial 30 day commitment to CSH, Mike was recommitted for up to 180 days; however, we are running into the same issues I ran into last year in trying to find a suitable and affordable placement.

I have been feeling a lot of stress and near panic attacks in the resent weeks. I've restarted an anti-anxiety medication and I know in my head that God is in control and there is nothing I can do, but my body is betraying me. I've been asking God to please tell me something. About 10 days ago, I bought something at the store and it came to $3.33. I just noticed it because it was all the same number.  Then a couple of nights in a row, I woke up at 3:33 AM.  OK, something is going on….So I prayed, God are you trying to tell me something?  The name “Jeremiah” popped into my head.  I got my Bible and was about to look up Jeremiah 3:33, but the thought came, no, 33:3. OK, so I looked up Jeremiah 33:3 and this is what it says:  “Call to me and I will answer you and tell you great and unsearchable things you do not know.”  Wow!  God Answered me. He was telling me that I can’t “Google” or research what I need to know, I just need to keep on calling out to Him and He will tell me great things and things I cannot find out on my own.  I just need to stay in His Word daily, and keep praying, seeking, resting, waiting, trusting. Letting go of control, worry, and anxiety. Last Wednesday my counselor prescribed going to a nearby lake, sitting and just being. It was wonderful and after her other words of wisdom during our session, I have felt less stressed, more relaxed and calm. God will provide what is needed in His timing. I do covet your prayers that I will be able to continue to rest in His all sufficiency.