The Beginning of A 56 day journey with no end!
I am a breast cancer survivor; five years this past May, in my mind the magic number!
Let’s do some personal history to set the stage:
I am 70, retired Oct. 2009 after 14 years employment with State of Arizona, married 47 years this month to a man my parents introduced me to Feb. 1959.
But what happened Sept. 5 changed my life forever:
Sept. 5th, a Sunday, I go for Sausage Egg McMuffins and when I walk into the house with them, something is off, I call my husband’s name and I hear his voice from the kitchen. He is lying on the kitchen floor and I can see that he his wrist is injured. He is not screening, nor crying in pain, just holding his left wrist which has formed a large knot. Check to make sure he is not bleeding from his head, which is up against the cabinet, no…Call 911 and within minutes the PMT’s are there and verify that he has broken wrist, they splint it and advise me to take him to the emergency room for treatment. So they help me get him into the car and off to John C. Lincoln we go; emergency staff advises that he should be admitted and that he will have to have surgery the next morning because the wrist is broken in three places. He is taken to a semi-private room; he is placed on a catheter. He still has not screened with pain, but he does have a very HIGH pain tolerance. Because he has never had a broken bone and this is only his second time in a hospital, I sleep in a recliner next to him.
Early Labor Day morning (6th) we are taken to pre-op where I meet the surgeon and they do surgery, pens/plates to fix the wrist. We are there in the hospital until evening of the 9th; they started therapy on 8th, which was walking him down the hall with walker. The doctor recommended that he be discharged however he advised that my husband would need physical therapy both to regain the use of the wrist, hand, arm and mobility, as the being immobile in the bed at age 93 had taken its toll on his body. Oh, I didn’t mention that my husband has dementia, not terrible but don’t ask him what he had for breakfast, however, he can tell you every John Wayne movie and reads the newspaper, watches NBC news daily and has an opinion on just about everything! Now up until the 5th my husband has only been on one med. Aricept, one 5 mg daily for past 14 years, NOTHING else! But they placed him on meds for the prostrate, pain (of course), sleep, etc…so now he is on six meds.
The fall/accident has been life changing for both my husband and I. Who would have thought that a badly broken wrist would cause all this trauma and life changes! But I have learned that at age 93 the body doesn’t respond the same as it would at a younger age. First the emergency room, then surgery on 6th, and the catheter. Then Sept. 9th to The Terraces rehab. where we were given private room and again I slept in a recliner for the first couple of nights, ‘til I felt comfortable with the staff and what was happening.
Now this is all new to my husband and me, being in the medical system, with social workers/doctors, Medicare and insurance companies calling the shots. I felt as though I was a rat in the cage, going round and round! No two people gave me the same answer, and most just ignored my need for answers. Because my husband’s care is being paid for by the insurances, you are assigned a facility doctor and cannot see your normal primary care doctor! This in its self was shocking to me, and my dear husband has slipped mentally due to all the meds, so I am it when it comes to making the decisions and asking the questions. The Terraces had excellent PT staff, but again the insurances have guidelines for the progress, and after 51 days we were discharged. However, after only about week, both the “assigned doctor” and staff advised me that due to his current condition, physically and mentally, and due to both our ages as well as my limited strength level, he should be placed in a nursing facility!
So they advised me to contact a placement agency which I did. I had a very specific criteria for what and where I wanted him placed, which greatly limited my choices. I should also add that we are normal middle income people so I applied and got my husband state assistance so we can afford to have him in a care facility, this again adds restrictions/rules/guidelines and limitations to the placement! But with the agency help and much PRAYER, a small home was found.
Nov. 16th we moved into the private care home where my husband has his own private room, which I placed his own TV so he can enjoy his movies and The Three Stooges. The owner/caregiver is very pleasant and likes to have male patients, each having their own room and never more than four. (She and her husband have been in the business 17 years.
He was assigned a healthcare plan, a visiting nurse along with PT person, however, after couple PT they decided he doesn’t need the PT. I was advised that I no longer needed to have the Medicare Supplemental insurance they would have visiting doctor of the plans choice. I had done some investigation and found out that I could retain my own insurance and continue with the doctor that had been treating my husband for the past 15 years as he knew him before the dementia, and last saw him in early Spring for his semi-annual physical.
We have now seen our family doctor twice, and he wants to monitor my husband monthly, which pleases me very much.
My husband has gone done hill the last couple weeks, mentally and emotionally, in my opinion being cathetered has caused most of the problem, plus just as I had feared he has developed a urinary infection (just learned that Tues.); started antibiotics yesterday, so maybe the mental changes will reverse when the infection clears up. Jan. 7th I take him for a procedure that may then allow him to have the catheter removed and let him be able to void normally like he did prior to the hospitalization! I have been with my husband, caring and advocating for him, however, the current caregiver and several professional medical people have suggested that I no longer see him daily but allow him to adjust to the new home/environment and his current conditions, which for me has been extremely difficult!
So my point of writing this is to be a resource and maybe help someone who is going through rough times dealing with placement of a loved one. I have had some experience before, my Father had stroke/heart attack at age 77 and almost immediately went into Alzheimer's and I was able to handle his needs. However, this was 30 years ago, plus my Father had the income to handle private care, so I did not have to deal with the “system”.
In my opinion, dementia and Alzheimer’s disease are the worst illness! No cure, and with each day a piece of the person you know and love dies, mentally, but the physical can stay strong, my Father lived seven years. It is so hard on the loved ones as you watch the person you know slip away. Like now my husband will one minute speak my name and the next refer to me as MOTHER! Very heartbreaking!!!