Respite care

Respite care is when you give over all you are doing and take a break. This is something that everyone needs when caring for a loved one who has a serious mental illness. I have been reading today about vacations, retreats, soul revival and other forms of  relaxing and getting away from it all. It reminds my of a very old commercial “Calgon take me away” and the person in the ad lounges in a bath of bubbles. Yes, being taken away would be great – except for one thing – you have to come back lol. Some days here where I am that  are just too hot and humid, 90 degrees, 90% humidity, even the air is tired.

So there are some things which I do to provide myself respite care, even if I do not or can not go away. First thing each morning I give my day over to God, letting Him know that I thank Him for the rest I had last night, and for His presence with me during the day. Then I go and get me a coffee, have a devotion with hubby and eat breakfast. Some days I exercise indoors due to the heat index, others are a bit more rushed with appointments to get to and chores to be done. In the between times to relax there is always some knitting project to be done, and of course one round of Angry Birds (yes it makes me laugh and I am terrible at it). Then when day is done off to bed with another devotion time, this time I read what is for the next day and thank the Lord for a quiet day, if it has been one, or for His presence and peace if the day has been fraught with anxiety and stirred up emotions.

So for all who have those lovely vacations pictures on Facebook, instagram and other places, good for you, I hope you are also including the Lord in your time “off” because He is never” off” . So today my prayer is for vacations, mini retreats, even quiet moments to pause and reflect and honor the presence of the Lord who never goes on vacation and is always present Amen

Transitions

So this past week the youngest made an appointment to go and talk with the admissions counselor at a transitional housing/work place. This organization helps those who have serious mental illnesses transition from where they are to a level of independence and helps them establish a work history as well as other things. The youngest made the appointment  and so we went. It took almost two hours and we got to tour the rooms and see the organization setup, which was good. The youngest and I had gone and talked with the admissions person about a year ago. This time we all went, hubby, myself and the youngest.

What did we learn? Well there are several things that the youngest needs to practice before he can go. First, he needs to get an id of some kind. I think his old driver’s learners permit is out of date for sure. Second, he needs to practice his money , management skills so we need to re-establish is debit card and checking account. Third, he needs to practice grocery shopping. Like actually going into the grocery store, picking out his groceries within the $50 per week limit given by the place and check them out. And of course he needs to fill out the application form.

Surprisingly, he has not been too overwhelmed by this. He is slowly working through the application form and does this little by little daily, this helps his focus and he doesn’t get overwhelmed. Once the application is in it may take up to two or three months to actually get to go for a “visit”. The visit consists of 5 days with him at the place doing the work and getting into a routine, then there is a post visit conference in which we all get together and decide if he is ready to take the next step.

For me I guess I never realized how much teaching goes on in parenting and I am thankful for the other three siblings who helped me walk this path without too much drama, lol. So now for the practice with the youngest and for the unwrapping, because we have certainly cocooned him quite well. Hopefully the unwrapping won’t be painful for him or for us.

So my prayer today is for patience in practice, for looking ahead and not behind (because we have seen the psychosis) , for encouraging words from us to him as he steps out beyond our tight cocoon, and for peace that this is the right step, and for the errors that will happen so that we can learn from them and set a straight path. And most of all thankfulness for those whose calling is for helping those with serious mental illnesses we thank the Sovereign Lord, who remains in, over and through all things, big and small AMEN

Accountability

Dictionary .com defines this as “the state of being accountable, liable, or answerable.” We all need to be accountable. The youngest is continuing on his journey with his peer counselor and so the other night at supper he asked “so when would be a good day to go and visit Caramore?” We were a bit surprised, but then he related that the PC (peer counselor) had asked him if he had made any effort to get to make a tour of this place. Of course he had not, and his dad asked him “Why are you doing this now?” And here is the thing – he had promised the PC he would get it done,  lol. Makes me smile –  a lot. Simple accountability, holding one to their word, promise or what they said they would do. I think about being reliable, which really is being accountable. Some people are not reliable, they have not been held accountable for their promises and sometimes it hurts others, yes we hurt others being unreliable.

But for today I am thankful, thankful for PCs , thankful for others who hold us accountable, thankful for the Lord who does not hold us accountable for our unfaithfulness when we come to Him and confess, thankful that He is always accountable, reliable, sufficient, faithful, forgiving and most of all loving. S my prayer for today is one of thankfulness and may the reliable all-sufficient Lord, El-Shaddi be present and a presence in your life as He is in mine. AMEN

Noise

We live in a noisy , distracting world and for those of us without serious mental illnesses we can usually get by with quieting ourselves. But for those whose brains are jarred anyway, sometimes the noise is overwhelming. And such is the case for the youngest, as with traffic, and all the noise bothers him – a lot. It bothers him so much that we have been taking alternate route, on back roads, where the traffic and the noise is less, but it really didn’t help too much. So one of the therapists suggested that perhaps some noise cancelling headphones might help. Finally the youngest looked up and researched and decided on some to try. And it does help though I am not sure to what degree, but at least we don’t have to drive 17 miles when we really only have to drive eight, a big time, gas, and nerve saver.

This week earlier the youngest got a phone call from his peer counselor. They had been talking about goals and one was for them to go to a poetry slam and observe and then perhaps one day for the youngest to actually participate. So the event was to take place tonight for them to go and observe, but yesterday the youngest confessed to me that he didn’t feel ready. I told him to discuss with the peer counselor and let the peer  counselor know his concerns. So he did, but can back and said “we will continue to look for opportunities” . Let me say that again “we will continue to look for opportunities!!!” .  So even if he did not go this time, the seed has been placed in his self to continue to look for opportunities and that is something I can water, fertilize and let it grow at it’s own pace. A positive outcome not disappointed in the results at all, waiting and watering the next step and thankful.

so today my prayer is one of Thanksgiving for noise cancelling headphones, perhaps I might try them out when the world rushes in so I  can hear the voice of the Father God. And thankful for seeds planted, positive steps taken, forward looking counselors, and the daily presence of the Father, who lifts us when we are in the pits, places people and things in our path, may I be ever watchful, ever open to teachings, and remain in His will and under His care AMEN

Begin- again

So we are starting again!!! Lol, isn’t that just like life to start over and over. The youngest met with his peer counselor person this week for the second time and hopefully this will help him move forward. I asked him what they talked about at their time when I picked him up and he told me “setting goals” . Wow, music to this tired momma’s ears.  I have been speaking to goals for a long time and sometimes it was falling on deaf ears, but perhaps now when a new person helping goals can be set and accomplished. And perhaps my goals were just too small, because some days were like, just get a shower, ok, not a shower, how about a wash, ok, not a wash how about letting me wash your hair, and finally hair washed . But perhaps that was the way it had to be at that time. Continue reading

Painting

Since the youngest developmental years were robbed by his psychosis, we have been playing catch up. And it is a hard task, for while he has the disorder schizoaffective, we his parents, have had to witness the effects/affects of what this disease has done. It has affected my parenting greatly and perhaps not for the better.    One of the things I believe is that parents are to guard, guide and direct their children so that they become productive individuals, honoring God and people. Ahhh, but when faced with this disorder, one takes the guardianship piece and makes it priority, unfortunately and we lose the piece of guiding and directing. How can you give that extra push when anxiety reigns and shows up in the simple things like riding in a car, causing panic attacks. How do you judge when to push and when to be still??

So anyway this week we pushed, we arranged for the youngest to help one of the deacons at church paint one of the classrooms. And he did it, yes there were some deep sighs and a few moans and probably an eye roll or two, but he went and completed the task. AND HE WAS VERY PROUD OF THE JOB!! Cue the parade!!

We also pushed again today when at family, he was introduced to a peer counselor. Someone who has been through similar things with psychosis and is now working and living on his own at a facility which the youngest has hopes of going to some day in the future, tiny little steps , but good ones .

so today is a day of thanksgiving, for those who reach out and take the risk of working  with the youngest whether he is volunteering at painting, stepping outside and making new connections. Praise to the Lord, El-shaddai, the all-sufficient one who remaining  with us daily, allows us to lament in His ear and welcomes us no matter what our condition, just as we are, tired, old, sad, happy, tearful any way we want to seek His presence, He remains present, near offering comfort, though maybe  no answers because His grace remains sufficient, His Love perfect,His grace unending. My prayer is that I never forget these even on the worst days, and that I remain thankful on the better days. AMEN

Acceptance or giving up

So this week and last have been hard on me and perhaps I am over thinking things. There is an art to acceptance, but there is also an act of giving up. And how do you discern the difference?? this is what I have been pondering this week and last. For me it is hard to accept that I now have to drive 17 miles to get the youngest to his appointments because his anxiety is at the point that causes panic attacks when we are on major roads with traffic. And even when we take the longer, back way which has less traffic, I look in the rear view mirror and see him clutching the headrest in front  of him for dear life, white knuckling the ride, this is not a peaceful country excursion, no, it is quite hard on him and of course on me also.

I wonder if this is as good as it gets and should I accept it, or should I keep on keeping on hoping for improvement , or should I give up and say ok perhaps this is it.  The argument goes around and around in my head and no answers come forth. And I also think that I am not helping by giving in and taking the back, longer way, wouldn’t it be better to have the youngest “tough it out” but then would the anxiety become so high we could not even go out and yes this has happened before so it does stick in my mind a possibility.

I have not mastered this art of acceptance,  nor have I given up in despair though there are days when I want to sleep all day and deal with everything tomorrow or never, neither of which is acceptable. And so it goes. The struggle is real, the possibilities small and large at the same time. Confusion abounds, discernment elusive and fleeting.

So my prayer today is for faith in the sovereign God who through all this mess and confusion , this dreadful schizoaffective disorder, remains immutable, remains in all things, through all things and over all things, and for me to remain under His will and in His care AMEN

What choice do we have

I was just reading about Laura Story and her Husband Martin, and their story of his brain tumor and the consequences of surgeries, and she said ” what choice do we have, we will always be in the midst of this battle with these consequences, and we have to do it every day, and boy she hit the nail on the head.

It has been two weeks since the youngest came down and said “my voices are back” and I feel like I have been stuck in mud, thick gooey, quicksand like mud. We are still moving forward and we have new hope for a peer companion to come alongside with the youngest and help in the next month or so which is a positive strong thing to praise the Lord for such programs. But the reality is that we too, will always be battling this disease of schizoaffective disorder, and there will be blips, and muddy slow as snail paced weeks when the progress seems oh so small.

This is the time when I lean into the grace of God, who gives endurance when all I want to do is to curl up in bed and have a week-long cry. This is the time of a sacred  sorrow, a deep lament like the psalmist does in Psalm 13. I can feel the deep distress of him who wrote ” How long, Lord, How long are you going to turn your face from me?” It is a deep cry , gut wrenching call, seeking the most high God in moments of weariness and distress. And yet it is not without hope, for the one who calls out also acknowledges the sovereign Lord, in whom he places his trust at the end of this lament. Someone recommended the book A Sacred Sorrow by Michael Card, and I am thankful I chose to get this book. It is a beautiful work about sorrow, because we all have sorrow at some point in our lives and rather than rushing through it, perhaps we need to sit with our sorrow, cry out to God and lament like those of old, Job, David, Jeremiah and even Jesus. Perhaps we need to bring back this skill of weeping before God, bearing our souls and being comforted by the one who is Comfort. It is hard work this lamenting, and it is sacred work.

So for today I am thankful for those who point us to resources whether it is a book or personal experience. Thankful we have a High Priest who understands our laments, and for the Spirit who intercedes when all we can do is curl up and cry for loss of words. Thankful for those who stop  and say prayers for peace and comfort in times of lament and thankful for the Son who bore the cross so we can come freely to the throne. AMEN

Blip, blip and prayer

So one week ago the youngest came down and stated that his voices had returned. And today one week later they are gone. Blip, they are here, blip they are gone. After getting blood work done, we got the results today, and his level was low on the one drug which sedated these voices, even from one month ago a big dip, so blip the voices returned.

I have to admit it was scary, as a nurse my first thought was “on no,  a medication breakthrough, this is not good” , but in thinking about what had changed and I could think of nothing that we had or had not done that would precipitate a drop. And I do not know if this will last or if once again the voices will return.

The amazing thing is we changed nothing but the voices have gone. Today I am giving full credit to God  because all those prayer warriors who I sent out emails, texts, and just plain asked  said prayers. Some are people I do not personally know, they lifted my family up in prayer after reading my last blog or they heard from a friend, or in church , on the email list serve and they paused and said a simple prayer. AND GOD PAUSED, BOWED DOWN AND LISTENED.  1 Peter 3:12 states “for the eyes of the Lord are on the righteous and his ears are attentive to their prayer” and this is so very true for me tonight. I feel that power of those precious prayers from all those who lifted the youngest up,my family and me up in your prayers.

I know this disease is awful, horrible, debilitating on the worst days, but on days like today, I feel victory. We had a blip, we faced it and we prayed. It did not take us to a place of fear, a place of not moving forward, no we slowed down our stride but we did not quit and this is victory, small but now the youngest knows he can do this and if the voices return at some other time, he will be able to look back on this blip and remember it is a blip, not a mountain, not a deep abyss just a blip.

so today my prayer is once again a prayer of thanksgiving, for prayer warriors seen and unseen, but mostly for the Lord who pauses  and is attentive to our prayers. It reminds me of the Psalm 8:4 ” what is man that You are mindful of him, and the son of man that you care for him” . Indeed pause and consider how wide  and long and high and deep is the love of Christ (Ephesians 3:18). We are Easter people and we are dearly loved even on the blip days, so do not fear , for IAM with you , do not be dismayed, for IAM your God, I will strengthen you and help you and uphold you in my righteous right hand (Isaiah 41:10) AMEN

Voices

So this morning while I was sipping my coffee, the youngest comes down and in a not so calm voice says “my voices are back ” , and the look of fear in his eyes. So as calmly as I could I asked ” what are they saying” .  In the past these voices have said, demanded, coajoled and screamed so good question. The youngest answered ” Welcome, welcome”. So I said to mayself well that’s not so bad, and aloud I said” ok well, we need to call and see if we can meet with the doctor today.” And so the day began.

You just never need to hold on to plans too tightly, because they can always change. And you can either be rigid and fight the change or you can be flexible and go with the flow, make a different plan and still move forward. As the Randy Travis song says, “nothing breaks if it can bend” and though I am older my agility seems to be getting a workout these days. This morning as I got up my mind prayed out ” this is the day the Lord has made and I am placed in it, guard, guide and direct my paths today. And I got on my t-shirt which has “fear not” written on it in bright yellow letters. My plan was to get the youngest to the lab for his monthly blood draw, pick up my finished tax forms and get new phones for us which we had ordered but had not come and I had decided to go to the phone store, interact with the staff and get that done. Well the blood got drawn as per protocol, after the doctor visit and with additional tubes to be drawn, the phones are here and I am trying to figure mine out (technology challenged in my own way), but the taxes did not get picked up and I was not able to have fellowship with some of the ladies at church, but all in all a successful day. And the voices diminished, to a mumbling noise, not the shouting voices of the morning. Perhaps this is when we sigh loudly, take multiple deep breathes, and acknowledge that we have no control, that the youngest may always be plagued by these voices but hopefully not so as to interfere with his activities of daily living. It is a puzzlement that confounds , frustrates, and produces anxiety, it’s irrationality completes throws you off guard. For me , I am profoundly blessed as I have prayer warriors so when something odd occurs, I send out texts, emails, calls and ask for prayers for peace. This is all I can do and I believe it helps me stay calm and dissipates the anxiety, because if I am calm, then the youngest remains calm and we both move through the day a bit easier,

So my prayer for today is thanks to all those prayer warriors who have sent up prayers and do so at a moments notice and just stop to pray to the God who remains in, over and through ALL things. Amen