Update : My son died. Went to ER Thursday evening his father saw him, told his home he needs to go to the doc, he had nonstop vomiting, and he died Friday the next day. Severe necrotic pancreatitis leading to other organ failure , septic shock and insulin issues found. It Came as a surprise to some since there were no pancreatic conditions diagnosed prior , yet . And his adult family home not quailed or educated to identify the alarming signs & symptoms. And they had very low budget blood pressure reading devices and other vital sign devices.. Which was once compared to the firemen findings And the home’s was not accurate compared. My Apple Watch was more accurate compared with heartbeat. So wondering who is going to be checking up on these home’s devices ? He had very high triglycerides that could have contributed to the pancreatitis over time. But again the home is not knowledgeable enough to be aware of this. And there were many communication issues between home and all of his specialists and doctors and state DSHS workers.And My young son Being bed ridden for a year and a half from muscle atrophy with joint subluxations / dislocations and contractures all caused by being bed ridden , confined to a bed, and not allowed to get up on his own terms at a hospital and later at the homes. Hospital and home Physical therapies and rehab were delayed or denied by Medicaid and ignored brushed off by state DSHS workers And some home PTs were not qualified enough to be interventional with his many cognitive issues and they had no proper equipment. He should’ve had inpatient rehab that was never approved which seemed like there is no common sense there or maybe just too costly, insurance denied. or hospital social worker didn’t know how to go about this , not sure . But Being bedridden like this could have contributed to the high triglycerides and overall poor metabolism, circulation, etc..Also, He had many serious medical conditions like adrenal insufficiency, and diabetes insipidus (not the insulin type) , seizures, cardiovascular issues , etc. And he was still recovering from radiation, stem transplant, and the very toxic and patient chemotherapies he had. This was the second time in his life he went through cancer treatments. So why was he placed in a low budget , very low skilled simple adult family homes by state DSHS. They would not approve him for a more skilled nursing home facility ever. And they often left the family in the dark about everything. And they often not returning phone calls or emails for weeks & even months , and faxing documents to them never ever went through no matter what day or time of day. He should’ve at least had some type of knowledgeable medically educated delegated person navigating and coordinating his complex medical conditions and state / Medicaid conundrums. It’s unbelievable .
I am so sorry for your loss. It looks like your son had a lot of health problems. Maybe there was just nothing that could be done for him. His body was just not strong enough to fight anymore. May you find peace.
JoAnn, I agree. This mom did everything she could. I would personally have opted for peace for my son sooner; as an old retired RN I don't really believe in keeping people alive past the point they can accept and digest their own food, and have made clear in my advance directive I would never want that. I think that this young man had a good deal more courage for the fight than I ever would have had. But his body could not endure more. Sepsis is so quickly lethal in someone without the health reserves to put up a huge fight. I lost my brother to it and he lost the young love of his life age 36 from a burst bowel and sepsis in the blood. The organs just go down like dominos no matter what.
This is very sad. I hope our OP Brand gets the very best of support groups and healing help. No one can truly understand this level of despair and pain who hasn't been there.
"He had many serious medical conditions like adrenal insufficiency, and diabetes insipidus (not the insulin type) , seizures, cardiovascular issues , etc. And he was still recovering from radiation, stem transplant, and the very toxic and patient chemotherapies he had. This was the second time in his life he went through cancer treatments."
I'm so sorry for your sad loss.
Your son was a very ill man, having had cancer twice; his system was weakened by the medications he had to get for his fight against the cancer. Diabetes added to all of this would have been nearly impossible to survive.
It seems to me that medical teams were perhaps not completely honest with you about the chances of your son's survival, OR it was perhaps something you just could not "hear" from them. I am assuming he was not in Hospice or palliative care. But his placement suggests severe disability.
Grief counselors tell us that when we lose a loved one we cannot bear to walk into grief, which is absolute and final. We will avoid that walk by staying back in "blame". Usually that blame is leveled at hospitals, rehabs, outpatient facilities, and etc. Sometimes we blame other family members, POAs and their choices; sometimes we actually blame ourselves. Sometimes we lose our faith and blame God.
That is understandable, but I would suggest that you get some therapy to help now to manage this sad loss.
There is no "perfection" in aging, in illness, in disability, in disease, in medical care or placement. There is no "ideal" that is ever met. And even in the best of care, some people are simply too ill to make it. Your son was not placed in SNF care; certainly we here on the Forum cannot conjecture as to why skilled nursing was not deemed "necessary", but the placement he was in was in no way qualified (nor expected to be) to diagnose early symptom of sepsis, which are in ALL circumstances, difficult at first to identify. My brother died of sepsis. As an RN I was well aware at how shockingly fast sepsis will attack to take out ALL MAJOR SYSTEMS. Moreover, it is tricky to diagnose at first, because at times the body fails to send alarm signals. In fact, blood pressure may fall and sometimes there is no temperature going up. Sepsis killed my brother quickly; no one would have been likely to save him once the onslaught began.
There is nothing now for this but acknowledging the loss of someone you love very much, and of walking into and through grief, searching for the time when you can remember the good days, and remember the life, and not the sad fight and the death.
You lost your boy too early.
T. S. Eliot said "The moment of the rose and the moment of the yew tree are the same". By that he meant one lives a short time, and the other long, but whatever the duration, it is, in full, a LIFE. I am sorry for your pain and wish you healing.