Salutations and introduction | Caregiver Action Network

Salutations and introduction

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Salutations and introduction

Hello All,

I should have done this a long time ago!  Hopefully I can help some others while working out ways of coping after all of these years.

I am 66, retired US Navy Hospital Corpsman, 1975 to 1995 (Advanced Laboratory Technologist then Cytotechnologist).  I retired fully in April of last year to return to fulltime caregiving for our 38 year old son.

Back in 2006 our son went to Hawaii with some friends and the third day there he and two others ran down the beach and dove head first into a very large wave.  There was very little water in the bottom of the wave and our son hit the bottom with his head.  He broke three vertebre in his neck, C-4,5&6, and sustained a dry-lung drowning.  Two nurses on the beach resusitated him as soon as his friends pulled him from the surf.  No brain damage, but a quad for life.  Fifteen years later, he is now a C-6/7 level function quad (for those of you who know what that means).  In 2018 after some deterioration, we collectively (him included) decided that he could no longer safely function at our home.  So we moved to a Southern state to be closer to our only other child.  She had done a lot of research and found what appeared to be a very good nursing home.   I found a fulltime job there and proceded to move him to the nursing home.  They had assured us that they had plenty of experience caring for quads.  This proved very wrong and after a number of months culmonated with bilateral staph pneumona and a life-flite to a large hospital.  He was on a ventilator for a month and then rehab for another month.  The hospital was filling up with COVID patients and they asked us to take him home.  So the first week in April 2020 I quit my fulltime job and we brought him into our home down here.  My wife works fulltime and now I and my elderly mother-in-law (Mom, whom I love sooo much) take fulltime care of our son.  I have had no respit at all for the past year and five months.  I occasionally can get away for two or three hours but never longer.  We have not been able to find anyone to help with caregiving.  The only two caregivers I have interviewed don't believe in the COVID vaccine so can't even be considered. 

I'm trying to keep a good attitude however, my routine requires care at 10:30 am for three hours, 6:00pm for an hour or more, 8:30pm, 11:30pm, 3:00am and then 8:00am (which Mom covers so I can get a little more sleep).

I'm looking for a forum with which to communicate with others who can understand my demanding lifestyle, hopefully gain some tools with which to cope and to help others with whatever I may have learned while on this 15 year up and down journey.

My sympathies to all of those out there in similar situations.  I hope I can help you as well as benefit from your experiences.

Sincerely, Cytogreg