Hello,
Marty still has some better days than others but we are seeing more good days than bad.
He was having days and nights with anxiety and I had a talk with him yesterday, a pretty challenging talk. What I have heard from all doctors and therapists over the past five months is that his anxiety is real and yet he is the one is charge of his breathing and also his progress. He needs to know that he has to do the exercises he has been given 2-3 times a day and also needs to gain control over his own ability to calm himself and relax. He has that ability and nobody can do it for him...other than himself. Dr. Laurencin prescribed a sign at the foot of his bed that reads "SLOW RELAXED BREATHS". He now reads it and pays attention. He is gaining control over his own anxiety and thus control over his own progress.
I said, "you have done so much and I know it's not easy, but it's time to stop paying attention to the problem and begin paying more attention to the solution...only you can do that" "We have a great team but most of the rest is now in your hands". We support you but you need to spend less time in bed and more time thinking about your recovery, no more "victim Mode". Hard to say and hard for him to hear. But he and I have never held back. He got it and today was much better. He was getting needier and more afraid and that had to stop, it was getting in the way of his progress. Today the caregiver came and I left, went to the ocean and spent time with my family. When I came home he'd had a nice shampoo and massage. they were watching a movie when I got home and he was smiling...
He hasn't gained the weight we were hoping for but he hasn't lost weight either and his weaning is progressing. The nurse and doctor are monitoring it and say we are on course and doing fine. It's a balancing act he uses calories when he is off the vent, and though he's spending more time breathing on his own and not losing weight we are moving in the right direction.
The doctor says he can have meetings once a week for only 30 minutes at a time. His first one was today. (We went over 10 minutes)
The doctor has increased his anti depressants a bit and adjusted some other meds. His nurse, Andrea is in contact at least every other day. He gets fluids 3 x's aweek via IV.We have gone back to square one on the supplements to add one at a time and watch his tolerance. Right now it's only high quality vitamens and some cannabis oil, as it helps a great deal with his mental status and relaxation. His dreams have gone from nightmares to good dreams.
We had a great benefit concert which he has been able to watch. It raised over $8,000.00 towards medical bills and cost of caregivers. We want to thank our friends and family who have given so much.
Caregivers have been so critical because he needs monitoring and care 24/7. For much of it I have been around to either train or monitor them, now we have a few who are caring and reliable.
Marty's friend Mitch has come by several times a week in support and even gone out shopping when I can't get away
Mitch bringing smiles...always
I am experiencing nearly constant pain which the nurse is convinced is triggered by stress and the physical strains of pulling him up in the bed or helping him in his daily routine, as well as lack of sleep. I am going to the doctor tomorrow to see what the diagnosis and treatment can be. At times it's made it nearly impossible to give him the care he needs when there is nobody here, which has been often. Less so now, and hopefully less and less and things get better. But as our case manager says...it's now on a slow upward climb and the long months are taking their toll and setting in, time to plan well the the long haul ahead and count on those who come because it is their job. The case worker from Palliative care said today " The only one to count on here is the one who organizes and sees it all 24/7..."You Ginny, you need to get the support and help you need and can plan on and count on" and get the time away you need go to your family and let them support you." So I am spending the weekend at my aunt and uncle's and checking in for the basics, but mostly getting out of the house which begins to feel oppressive when you can't get away. I Love Marty and I love being home, but when you have to be somewhere without being able to leave, after nearly 3 months, it's time to get away.
So all in all we are still on the long slow climb upward.
We have a great team
I am dealing with my own care as well
Please keep us in your thoughts and prayers.
With Love and gratitude,
Ginny and Marty Collins
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| From "Music for Marty" part 2, Jim Lewin, Ginny and Mary McCaslin | :Photo Fred Arellano |
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| Lacy J. Dalton Photo: Fred Arellano |
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