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.
Re-read post, FYI. The medical team here tomorrow is from Suncoast Palliative Care,
ReplyDeleteMaryAnn, thank you for doing this blog. I can't imagine the depth of your struggle. What a precious soul Nicholas is. Through all of this may you both know and feel God's presence, His love and gentle peace. Give Nicholas my love. If there is anything I can do please just let me know. I know you are well supported by your circle of friends. You both are in my prayers. I think of you often.
ReplyDeleteThank you for taking your time, and for the prayers. They WORK!
DeleteThank you so much for the gift of this blog. Please give Uncle Nick a hug from us and give him our love. Take care Maryann and remember the caregiver needs some TLC too!
ReplyDeleteAgain thank you for the update Maryann. My heart goes out to you. I truly understand the issues you speak of and they aren't easy to deal with by any means. I thank God for your strength in taking care of Uncle Nick and I pray that strength continues for you and for him. Sending love and light to you both.
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