My brother died. That’s the sum total of what’s been happening.
The good news is, we’re so grateful we got a little time with him even though there were many problems at the end. And, my one remaining brother (of three) and I were both here that day and took the call. So, his wife and young children were not alone, although nothing and no one, of course, can sub for the loved husband/father/son/brother/uncle/friend.
I’m going to try to say this one time.
We got a LOT of grief from the health care system because he didn’t have anything in writing. No living will, no durable power of attorney, no health care power of attorney. Both the cancer and the stroke doctors very excitedly explained to me why he was so *lucky* and had such good hope of complete recovery.
BUT his ability to communicate and understand were both severely impaired, AND there were some social worker types who decided he wanted to die. They really gave him and us a hard time.
We (the family) know from things he said to us and things he did (like set up a very aggressive treatment plan) that he wanted to live. And we made the decision together early on that our job was to try to get him what he wanted and his wife should have the final say.
This year at age 62 he had finally gotten his life together. He finally had bought (six months before) a small *ranch* with pool and pole barn for horses. He had gotten his 8 and 6 year old children in the best school. He was less than a year from qualifying for his second small retirement. He had been married 9 years - first marriage for both - and, in the family’s eyes, was *finally* happy.
He was sometimes confused from the stroke and almost always couldn’t talk. Yet he regularly made jokes with the nurses and sometimes tried to take care of us. He always pushed to get up and do things. We could tell he had a lot of his mind still working, and the neurologist expected him to get pretty much everything back.
I brought in a humorous book he had written, to read to him. He teared up and laughed at his jokes, then held the book in his lap, stroking it, after he got too tired to listen.
He recognized all of us. He insisted on getting up in a chair and feeding himself. He repeatedly told different ones of us that he wanted to do everything himself, and he wanted to go home.
But because he resisted them *helping* him, an admin assistant to the social workers decided he wanted to go to hospice and die.
This resulted in hospice and a psychiatrist being called in who in 3 minutes decided my brother couldn’t communicate at all and wrote an order for the hospital to call in legal assistance to stop the family from trying to *make* him get better. WHAT a mess.
He had talked much in recent years with my other brother, about the need for him to step in and help *if anything happens to me.* But, he never put it in writing. He wanted to live, but he never put it in writing. He told us his wife would have to have help handling finances, but he never put it in writing.
He canceled his cancer insurance two years ago. He didn’t get life insurance on the mortgage taken out six months ago (he had filled an application out but never sent it in). He didn’t get life insurance on his two young children’s prepaid college tuition accounts. He was four payments short of qualifying for life insurance in NC and 2/3 years short of qualifying for retirement in FL. Their marriage was 9 months short of qualifying his wife for social security for life (which she will need).
Really, it is not all bad news.
There is some good news financially, although not near enough to pay off the debts or provide an income at the level they were living. If his wife can get a good part-time job on weekdays they will probably have about 60% of what they were living on. Looks like she can’t stay in or get any money from the house, which is a huge wrench to them because they finally got settled and are tired of moving, and, it represents their dreams and *daddy.* Going back to renting is *unbelievable* to her. I’ve rented a lot, but I understand that from her background it is extremely hard.
If my brother had done even half the paperwork and preparation he talked to us about, things would be much easier for them. The big *if.* That’s the current and future.
What was the most shocking was the last two months.
The amount of pressure in that hospital on protecting my brother’s so-called *right to die* was unbelievable.
Even the doctors backed completely away, even though my brother would nod *yes* when they said “do you want to live?” and shake his head *no* when they asked, “do you want to die?” Nobody in that hospital would stand up for his right to live. A few did try to help us but had to do it *under the table* and remain nameless, for their own protection.
The amount of pressure to NOT get him the help he needed was unbelievable. It was ungodly.
Most people want you to sign a living will so they can keep you from endless life support. Even though the prognosis on both his diseases was excellent, people were saying repeatedly, “but maybe he is just tired and wants to give up. You have to let him die if he wants to.”
So why was he fighting to get up and go home and even using his strong arm to do therapy on his paralyzed arm? Can someone explain this to me?
So now I will put in writing my own will to live. I don’t want a right to die, I want my right to live. If I can’t speak for myself I don’t want the health care industry enforcing a so-called *right to die.* What about my right to live??
I will fill out and have notarized a durable power of attorney that gives someone I trust the right to speak and sign for me, they will be able to help me when I can’t speak. And, I will do a will for myself, something simple - just so my family is not left holding the bag and letting the state do what they want.
I don’t like the idea of being in that position, but letting the social workers and the state make the decisions is even worse.
You can get a form for durable power of attorney from an attorney, out of a book, or free off the internet. But they are state specific, so find one for your state. Same with the Living Will. Just make sure it expresses your desires, and if you don’t want to be put out to die, be sure to express your *right to live* in your living will.
All my brother wanted was to get out of bed and come home and live the best he could. I could see that he didn’t like his paralysis but he accepted it happened and was trying to make the best of it. He was even moving his paralyzed leg in the last month so there was great hope that he would walk again.
Please don’t let yourself or your family get in a position where you have to fight the *system* as well as disease or injuries for your loved one. You must have the papers signed before something happens to you.
And don’t just talk to your family about how you want things set up *in case.* Get them set up that way. It is too late to get insurance *after.* What they told you they wanted (or what you say you want) will not be believed or acted on, only what was put in writing.
In keeping with my unique brother’s personality, the funeral was a memorial service and picnic, but that’s another story.
We are working on finding and dealing with all the paperwork and transitions, trying to help as much as possible. And then, sadly, this young family will be too much on their own no matter how we want to help.
As for me, I’m still in Cocoa, have gained back about 25 pounds in four months, and barely fit in the clothes I have with me, haven’t even tried on suits in almost two months. I’ve let myself get back on a lot of junk and don’t have much control of what is bought or served. But I can still make choices, so have no excuse. I really want to take back the ground I’ve lost and get back on a more healthful track, no matter which way my life heads from here.
And, that, friends, is a total unknown at this time.
Thanks so much to all of you who have continued checking in on me and leaving notes even when I have been *incognito.* You are such an encouragement! I will strive to do something *good for me* every day and get back to reporting in. That’s my goal for the day.
What’s yours?
