Before I do anything else, I want and need to thank the scores of people who sent healing hugs, thoughts, light, and prayers over these past few weeks since my brother was moved from nursing home, to hospital, to a surgery floor, then ICU, and then into hospice. I know the love you send to him and to me helped us, healed us. I am so happy that friends and new readers found my words to be worth comments, concern and sharing. I did not think my pain would become evergreen. But it might.
Thank you all for your caring and compassion. I did not ask for it lightly. I could not do that. That is why I am sheepish.
At the moment I am teetering between wonder, thankfulness,tears of joy, and befuddlement and sheepishness. My brother seems to be getting better. I cannot express how happy I am that even though he will always have memory problems, and confusion, and will be in a wheelchair, he is alive and getting better. I am actually crying tears of joy right now. His son, who is the same age as my daughter, has his dad for a while longer. My brother WAS in HOSPICE… and he did not die.
I know about hospice. I have lost my parents and two brothers. Of these loved ones, three went through the hospice program as they lay dying. These last couple weeks have been emotionally grueling. I know I will have to say goodbye to my brother sooner than I should have to. I mean I know this because I have already said it. I say it whenever I leave him after a visit because the 2,000 miles between us means I cannot see him often. Those visits do not always find him lucid and knowing who I am.
There is so much wrong with this scenario.
His son is working like mad to try to get him unclassified as terminal, which the majority of the staff no longer believe he is, so as to get him moved to a VA hospital where he received good care a couple of years ago when he was initially diagnosed with severe dementia. The care they provided stabilized him to the point where he could carry on normal conversations that would fool most people listening to them. Only those who knew him well could see that he was floating in time. I started to think of him, quite affectionately, as my Billy Pilgrim.
How can a man when removed from feeding tubes, antibiotics, and all treatments intended to help him recover from infections and surgery, because of medical judgments that he was dying and placement in hospice — then get better? Something happened.
Miracle? Maybe, almost certainly. But there are other elements here also.
Misdiagnosis? Could be. We would have to have access to his medical records to determine the extent. The hospital will not release them.
Malpractice? Very possibly. My brother has always been allergic to penicillin and similar antibiotics. Hubby, the brilliant neuro-chemist, says this sort of “allergy” usually is due to a “leaky blood brain barrier.” Make sense to me. Another brother had problems with unequal membrane regulation between parts of his CNS. That brother’s spine – brain fluid balance was “off.” He had to have a shunt implanted.
So what happened? We do not know.
The Nitty Gritty of Getting Better
It seems that when they stopped feeding Roger through the surgically implanted stomach tube, and stopped the massive antibiotic treatment he was previously on, he began to get better. This is a report to me by a friend of my brother who visited him earlier this week and then messaged me:
Friend: The nurses said he doesn’t eat , but I couldn’t get the food in his mouth fast enough. He drank 4 glasses of water and 2 apple juices.
(later)Met (His son is) … taking him out of hospice and having him moved to Marion – care there is better. The care in Marion is light years better than FW.Friend: I agree he was starving and dehydrated. I wanted to scream at them.
I have a related story going on now w/ my friend at Stanford. There is absolutely no understanding of the patient as an individual who might differ from the “norm”. I am so sorry. xoxo
thank you, Carol. I am so glad he is alive, and healing, but the hurt and pain he, and we, have been through is unconscionable. I remember when you posted and when she was rediagnosed. What the hell is going on in our healthcare system?
My husband is a hospice volunteer and he has had one patient now for over a year. She should never have been in hospice in the first place and is no longer there but her kids couldn’t care for her at home and didn’t know what to do. She’s now in a nursing home and not officially my husband’s patient any more but he still goes to see her every week because, well, that’s what people should do for each other. I’m sorry you had to experience this but I’m glad your brother is still with you, and I hope he continues to improve. The state of healthcare in this country is shameful.
Your husband is a treasure. So kind and loving an action, blessings to him. Yes, shameful is the right word.
Ugggghhhhh…. The words “too much trouble to try to get him to eat” made me want to throw up….I know too many care providers to believe that these nurses started out in their profession because they wanted to throw those who need care out with the trash or did not want to bother…so what happened? What went so horrible wrong within this system, one intended to be the means to care and heal, to create this barbaric feeling situation? I guess what infuriates me most is this: just because your brother’s life and care is not easy does not make him any less deserving of, at the very least, compassion, kindness, and reasonable quality of care. Caring is not a bother or a chore – it a passion and a gift to both the giver and the receiver. Even minimally reasonable quality care sees beyond what we don’t understand (even when realities don’t match) to preserve human dignity and comfort where possible…. Distressing…. I hope your nephew is allowed to move him with a bit of dignity and peace. I know, preaching to the choir….
Oh Ruth, you so understand my frustrations. I know people who are nurses and who care… but when hospitals are understaffed with properly trained people they become little more than beds in a downward facing funnel to nursing homes and death. There is so much that needs revision in our country. It is overwhelming at times.
I am so sorry for your losses, so sad.
I work with hospice patients and I have seen several ‘get better’ and be taken off of hospice temporarily including my own father.
One thing I know for a fact is that it is not a good idea to ever leave anyone alone in any kind of hospital, nursing home or rehabilitation facility. Some staff members may be kind and empathetic but unfortunately many others just do not give a damn and they are neglectful.
I hope your brother continues to improve and you get the answers you deserve.
Doreen, thank you. Yes, our society is broken in how we allocate our precious resources. My nephew visits as much as he can, but he is alone in this and is only 25. He lost his job when he tried to take care of my brother at home. My brother does need an advocate and his son is learning that. A couple of friends are regularly visiting too. The VA actually provides the most stimulating environment for him I think. Thank you for sharing your knowledge about the system.
What a frustrating set of circumstances. Each one layered on top of the other…your distance, his dementia, the lack of care/caring from the medical staff. I pray you continue to sort it out.
All I can really do is try to support my brother’s son and encourage friends on Facebook with connections to him to visit if they can. All of us of a certain age might want to consider that this is us in a few years.
The “system” is horrendous, Nancy, I fully and wholeheartedly agree. My MIL wouldn’t be in the shape she’s in (incoherent and a leg amputated) if the system had worked for her and she hadn’t fallen in the shower at the nursing home (which serves as hospice in the small SD town where she and my SIL live) and bonked her head so hard she never returned to herself. It sucks.
But, on a positive note, I’m glad your brother is doing better. I’ll continue sending good thoughts his way, your way, the family’s way in hopes he continues to heal and the situation improves as well.
Thanks so much Lisa! Your thoughts and prayers are appreciated. Everyone seems to have a story about horrendous health care. How did we let this all get so messed up?
Oh, Nancy. When I read this, I thought–of course. Hospice was created so that the care of the terminally ill was caring and appropriate for their needs. But it has, like so much else in health care, been institutionalized with the eye being kept firmly on the bottom line. “Caring and appropriate” have now been reduced to the quantifiable. “Outcomes based” for those considered terminal end up being “limited”. You have those like Lois’s husband who are clearly doing the work because they believe in the cause; for the rest, I am afraid it is just another job.
Outcomes-based for hospice? Yes that is what is happening, Jane, and quality of life cannot be quantified. I remember the uproar over assisted suicide, but assisted death through neglect is okay. It boggles my mind, heart, and soul.
Yes, the mention of “too much trouble to get him to eat” makes my skin crawl. Clearly your brother had an appetite but no one cared. OMG Nancy, terrible situation, but I am so glad your brother is doing better now.
It is more than disturbing. We have to get stories like this out there so people know what baseline care really is like in the U.S.