Saturday, May 31, 2014
Really not a day to mention, horrible comes to mind, please pray for PC and for me, it is NOT good here. He has requested going back to hospital, this time to VA in St Petersburg. Taken by ambulance about hour ago, and does not want me involved.
Flashback to a time three years ago, and multiply times 3. That is the reality of today.
pieces so carefully put together are coming un-sewn
Macs.
Saturday, May 31, 2014
Friday, May 30, 2014
Thursday, May 29, 2014
NOT AMUSED. at all!!
Thursday evening, PC now soundly sleeping, I pray.
This has been a VERY stressful day, starting before 6, and suffice it to say pain medications are helping the physical pain, but behaviors becoming more "out of the box", so I ask for petitions of prayerful thoughts and offerings to GOD that the medication and his mind to adjust to these rapid changes.
Today was so like three years ago, only this time no police or EMS, no questioning of me on suspicion of harming my hero. That was a true livid nightmare.
When the obstinate behaviors take over, it does become a challenge. AND even this humble scrap quilter, who tries to make something beautiful from bits and pieces, is somewhat befuddled today.
Tonight, may just sew random strips together, at least something will be visible and tangible in my world as the rain clouds circle my abode. Looking out my window, I see such a stillness and amazing gray shades surrounding my world. Is this symbolic, or a new color scheme for my next project?
Trying to find peace, with random pieces, and the true knowledge that I do not walk this path alone. And believe that this is my journey, and I must walk it.
Only with friends, family and my faith community can I even hope to complete this scrappy quilt. The colors, pieces, pattern and shape are such moving target, who knows what this will turn out to be....piece by piece, bright and dark, Fun and miserable, light and off centered, just like my existence?
Again, I wish all piece by piece, peace with peace and grace! Macs
Thursday evening, PC now soundly sleeping, I pray.
This has been a VERY stressful day, starting before 6, and suffice it to say pain medications are helping the physical pain, but behaviors becoming more "out of the box", so I ask for petitions of prayerful thoughts and offerings to GOD that the medication and his mind to adjust to these rapid changes.
Today was so like three years ago, only this time no police or EMS, no questioning of me on suspicion of harming my hero. That was a true livid nightmare.
When the obstinate behaviors take over, it does become a challenge. AND even this humble scrap quilter, who tries to make something beautiful from bits and pieces, is somewhat befuddled today.
Tonight, may just sew random strips together, at least something will be visible and tangible in my world as the rain clouds circle my abode. Looking out my window, I see such a stillness and amazing gray shades surrounding my world. Is this symbolic, or a new color scheme for my next project?
Trying to find peace, with random pieces, and the true knowledge that I do not walk this path alone. And believe that this is my journey, and I must walk it.
Only with friends, family and my faith community can I even hope to complete this scrappy quilt. The colors, pieces, pattern and shape are such moving target, who knows what this will turn out to be....piece by piece, bright and dark, Fun and miserable, light and off centered, just like my existence?
Again, I wish all piece by piece, peace with peace and grace! Macs
Wednesday, May 28, 2014
Musing, mused, and not amused!
Wednesday, May 28" , 2014
Busy two days, even wrote a blog entry that somehow has vanished in cyber- weird way. So, if this appears redundant, maybe that is just the way things are now!
PC, Prince Charming if you forgot, is now back home. He got here about 3:30 today, via ambulance. He is heavily medicated but reports no physical pain, just drowsy and confused from all the activity of late. He is asleep now, and hopefully will remain so until time to wake him up for evening medications. There was a struggle keeping the morphine pump in his body, either he pulled out, or body pushed it, of something weird.
Therefore, after struggling for two days, he was switched to oral medication, three times a day, with a backup medications for break- through pain.
Tuesday early morning I got a call, he was out of control, confused, screaming, etc. They asked me to come and try to calm him. Of course I did, when it got there , there were two nurses outside his door, and one inside his room. When he saw me, he smiled, said I love you, and went to sleep after asking if I was staying. So stay I did. I was there when breakfast arrived, and left after dinner. He has NO memory of any of it.
Social worker asked and did research to see if any other options are available. But, as she found out, with the medical complications, as well as psychological, home is the only safe and available place.
Well, think I have been through this before, so nothing new. Three years ago, a very similar situation
ensued, and home we are, for the duration, as my dad used to say!
At times I think back of last three years, it was May/ June of 2011 when PTSD took major control of his and my life. Wow, how things change. Life is so fragile, and memories so fleeting yet present.
Today a veteran volunteer came to house to present him with a certificate of appreciation for his service. The volunteer was a former marine, so I also had memories flooding my mind and spirit. PC could not even look at him.
It was sad, however the certificate is now taped to his bedroom wall so he can see it when he is ready. And he had me read it to him when the marine left.
Medication must be consistently administered, so I think I shall become an early riser! I need more time to scrap quilt anyway, right?
Till next time, may all your pieces line up. Your seams not have to be unsewn and the corners look sharp,
Peace....macs
Wednesday, May 28" , 2014
Busy two days, even wrote a blog entry that somehow has vanished in cyber- weird way. So, if this appears redundant, maybe that is just the way things are now!
PC, Prince Charming if you forgot, is now back home. He got here about 3:30 today, via ambulance. He is heavily medicated but reports no physical pain, just drowsy and confused from all the activity of late. He is asleep now, and hopefully will remain so until time to wake him up for evening medications. There was a struggle keeping the morphine pump in his body, either he pulled out, or body pushed it, of something weird.
Therefore, after struggling for two days, he was switched to oral medication, three times a day, with a backup medications for break- through pain.
Tuesday early morning I got a call, he was out of control, confused, screaming, etc. They asked me to come and try to calm him. Of course I did, when it got there , there were two nurses outside his door, and one inside his room. When he saw me, he smiled, said I love you, and went to sleep after asking if I was staying. So stay I did. I was there when breakfast arrived, and left after dinner. He has NO memory of any of it.
Social worker asked and did research to see if any other options are available. But, as she found out, with the medical complications, as well as psychological, home is the only safe and available place.
Well, think I have been through this before, so nothing new. Three years ago, a very similar situation
ensued, and home we are, for the duration, as my dad used to say!
At times I think back of last three years, it was May/ June of 2011 when PTSD took major control of his and my life. Wow, how things change. Life is so fragile, and memories so fleeting yet present.
Today a veteran volunteer came to house to present him with a certificate of appreciation for his service. The volunteer was a former marine, so I also had memories flooding my mind and spirit. PC could not even look at him.
It was sad, however the certificate is now taped to his bedroom wall so he can see it when he is ready. And he had me read it to him when the marine left.
Medication must be consistently administered, so I think I shall become an early riser! I need more time to scrap quilt anyway, right?
Till next time, may all your pieces line up. Your seams not have to be unsewn and the corners look sharp,
Peace....macs
Sunday, May 25, 2014
Day 7920, Sunday, May 25,2014
Been two days of piecing, and peace-seeking. Before I provide scratchy details, I want to take a moment to explain my thoughts on this process, IE: the blog. So many of our friends, and family live outside our immediate area, and I fear I have not kept up my address book of late, so this offered a way for all to find information, as desires.
OK, so what has happened.
On Saturday, PC was transported via ambulance to a Suncoast Care Center. There are three here in Pinellas County and he chose to go to the one that the doctor he likes would be working this weekend. Good choice, since they had a room. He is in a lovely private room, large, overlooking a fountain and very calm and calming.
On Saturday, he was started on a morphine pump, in an effort to address his physical pain. At this writing, Sunday evening, the dosing has been slowly increased and now he reports feeling much less pain.
Communication with doctor has been done, as well as details on management when he returns home. It is anticipated some time next week, pending an further complications. A RN will be visiting daily to address the medication needs, etc.
So, thank you to all for all the prayers and supportive encouragement. When I left this evening, I noticed a remarkable return of his smile and returning personality! Peace,,,,think I will work on my scrap pieces for awhile tonight.
MACS
Been two days of piecing, and peace-seeking. Before I provide scratchy details, I want to take a moment to explain my thoughts on this process, IE: the blog. So many of our friends, and family live outside our immediate area, and I fear I have not kept up my address book of late, so this offered a way for all to find information, as desires.
OK, so what has happened.
On Saturday, PC was transported via ambulance to a Suncoast Care Center. There are three here in Pinellas County and he chose to go to the one that the doctor he likes would be working this weekend. Good choice, since they had a room. He is in a lovely private room, large, overlooking a fountain and very calm and calming.
On Saturday, he was started on a morphine pump, in an effort to address his physical pain. At this writing, Sunday evening, the dosing has been slowly increased and now he reports feeling much less pain.
Communication with doctor has been done, as well as details on management when he returns home. It is anticipated some time next week, pending an further complications. A RN will be visiting daily to address the medication needs, etc.
So, thank you to all for all the prayers and supportive encouragement. When I left this evening, I noticed a remarkable return of his smile and returning personality! Peace,,,,think I will work on my scrap pieces for awhile tonight.
MACS
Thursday, May 22, 2014
Day 7917
May 22, 2014
What a day! First off, thank you for caring enough to read, and hopefully support this humble blogger.
Today dawned bright and sunny, how I know this I am rarely awake as the dawn comes up..Usually we are up very late, and then sleep into the morning. However today was a special day.
The SunCoast Hospice neurologist came to house today, and was so patient in explaining everything to Prince Charming and me. He was accompanied by the RN Case Manager, and so helpful.
After lengthy discussion and evaluation of all medications, Prince Charming, (PC) for brevity sake, spoke to him about his long term pain and desire to be pain free, as much as possible given other medical conditions. It appears that the case manager had communicated with all other medical professionals on PC team, and had notes of discussions with same.
PC will enter the SunCoast Care Center on Saturday, details to follow later, for 3 to 4 days, in an effort to medically monitor, closely, his adjustment and reactions to new pain treatments. It appears, at this point, that this is the best option, given the CHF, PTSD, GAD, COPD. This the safest method. PC related well to MD, and he will be monitoring care. Pray for calm and patience for my prince, please and strength for me to continue this path.
I do not feel like discussing this. please understand I am trying not to cry and let him see or hear me. He is so vulnerable and sensitive to changes in my mood, I am learning to "act as if" everything is normal, what a joke!!!
May all your pieces fall into line, and peace prevail...macs
Last night my scrap bin received lots of attention, mindlessly sewing random lengths of 2.5 inch strips together. Actually emptied the bin, and now feel better!!!
Till later, piece happily and freely. And be at peace! Macs
What a day! First off, thank you for caring enough to read, and hopefully support this humble blogger.
Today dawned bright and sunny, how I know this I am rarely awake as the dawn comes up..Usually we are up very late, and then sleep into the morning. However today was a special day.
The SunCoast Hospice neurologist came to house today, and was so patient in explaining everything to Prince Charming and me. He was accompanied by the RN Case Manager, and so helpful.
After lengthy discussion and evaluation of all medications, Prince Charming, (PC) for brevity sake, spoke to him about his long term pain and desire to be pain free, as much as possible given other medical conditions. It appears that the case manager had communicated with all other medical professionals on PC team, and had notes of discussions with same.
PC will enter the SunCoast Care Center on Saturday, details to follow later, for 3 to 4 days, in an effort to medically monitor, closely, his adjustment and reactions to new pain treatments. It appears, at this point, that this is the best option, given the CHF, PTSD, GAD, COPD. This the safest method. PC related well to MD, and he will be monitoring care. Pray for calm and patience for my prince, please and strength for me to continue this path.
I do not feel like discussing this. please understand I am trying not to cry and let him see or hear me. He is so vulnerable and sensitive to changes in my mood, I am learning to "act as if" everything is normal, what a joke!!!
May all your pieces fall into line, and peace prevail...macs
Last night my scrap bin received lots of attention, mindlessly sewing random lengths of 2.5 inch strips together. Actually emptied the bin, and now feel better!!!
Till later, piece happily and freely. And be at peace! Macs
Wednesday, May 21, 2014
May 21, 2014 Musing of a scrap quilter!
Today is day 7,916 of knowing my Prince Charming, and I must say, he is still charming and lovable, although at times trying and troublesome, he truly is my Prince Charming.
OK, for an update: As you may know, last week, Nicholas agreed to a referral to Suncoast Hospice for palliative care, his physical pain is not responding to the medications he is prescribed and his general physical health continues to decline. He is weary, I do not know how else to describe it.
So, the thought came to me, write a blog, nothing fancy and no beautiful graphics, etc. just information to those who may be interested. I am struggling with the daily tasks and watching with acceptance yet hesitation this process unfold.
Today, after waiting for almost 9 months for an opening, he was admitted to Home-Based Primary Care through the VA. This means they will come to him for medical appointments, since he now is confined to our home. The ARNP was here from 12 til almost 2, he is exhausted however was able to respond to all her questions,etc.
The ARNP, as part of the admission paperwork, spoke to him about the DNRO, and he asked questions, etc. He willingly signed for her, so now that is one less thing, another piece of this life quilt, taken care of.
This referral will mean visits from PT, OT, social worker, psychologist, lab, etc. the entire resources of the VA will be brought to him, not him to them! Thank You GOD!
Followed, another miracle, a piece for peace, in that the VA psychiatrist made a telephone appointment followup for him, in lieu of trying to physically get him to St. Petersburg.
I spoke with the psychiatrist, and fully understand the complications or not that may result in a change in his pain medications with his psychotropic meds. I emphatically believe that Nicholas should not live his days in such physical pain he streams in agony.
Only change thus far, is terminating the cholestrol medication, he is amazingly great!
Tomorrow, another large piece to work on. Neurologist from VA, with the assigned RN are coming in morning to evaluate his medications and see what can be done to relieve the pain and bring him comfort.
PLEASE--
pray for peace and lots of pieces fitting together here!!!
so I will keep y'lll posted, remember, lots of scraps can and do make an amazing quilt! peace to all.
OK, for an update: As you may know, last week, Nicholas agreed to a referral to Suncoast Hospice for palliative care, his physical pain is not responding to the medications he is prescribed and his general physical health continues to decline. He is weary, I do not know how else to describe it.
So, the thought came to me, write a blog, nothing fancy and no beautiful graphics, etc. just information to those who may be interested. I am struggling with the daily tasks and watching with acceptance yet hesitation this process unfold.
Today, after waiting for almost 9 months for an opening, he was admitted to Home-Based Primary Care through the VA. This means they will come to him for medical appointments, since he now is confined to our home. The ARNP was here from 12 til almost 2, he is exhausted however was able to respond to all her questions,etc.
The ARNP, as part of the admission paperwork, spoke to him about the DNRO, and he asked questions, etc. He willingly signed for her, so now that is one less thing, another piece of this life quilt, taken care of.
This referral will mean visits from PT, OT, social worker, psychologist, lab, etc. the entire resources of the VA will be brought to him, not him to them! Thank You GOD!
Followed, another miracle, a piece for peace, in that the VA psychiatrist made a telephone appointment followup for him, in lieu of trying to physically get him to St. Petersburg.
I spoke with the psychiatrist, and fully understand the complications or not that may result in a change in his pain medications with his psychotropic meds. I emphatically believe that Nicholas should not live his days in such physical pain he streams in agony.
Only change thus far, is terminating the cholestrol medication, he is amazingly great!
Tomorrow, another large piece to work on. Neurologist from VA, with the assigned RN are coming in morning to evaluate his medications and see what can be done to relieve the pain and bring him comfort.
PLEASE--
pray for peace and lots of pieces fitting together here!!!
so I will keep y'lll posted, remember, lots of scraps can and do make an amazing quilt! peace to all.
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