Guest Blogger Mary Jamison: The Lessons Keep Coming
Guest Blogger Nancy Belle: On Turning 65 – Lessons Learned

Guest Blogger Ronni Prior: The Snowball Effect

While I am away in New York City for a couple of weeks, a fantastic group of elderbloggers and elderblog readers agreed to fill in for me. Today it is Ronni Prior of Rants by Ronni. Scourge of the Internet, she started blogging three-and-a-half years ago, just to have something to do while quitting smoking. So far, she's winning.


Everything was going well with Addy, until she fell. Oh, she had myriad health problems, mostly stemming from two fierce habits: cigarettes and vodka. But, as I said, everything was going well. She lived alone, and either Jim or I went over to her house every day. I took her to the doctor and the grocery store, and garage sales and the antique mall. Jim did her bills. We played Jeopardy and Wheel of Fortune right along with the contestants on TV.

And then, she fell. It was not the first time she had fallen. The time before that, she had dislocated her elbow. Still, this time, she and I were shopping and she stepped off the curb to get in the car and she fell.

I knew I should have made her stay down, but she insisted on getting up with the willing assistance of passers-by. She was apologetic about cutting short our expedition, but she thought she really needed to go home. I thought she really needed to to to the ER, but, bless her heart; she didn't want to hear that.

In the middle of the night, she called. Her leg was hurting and she thought she might have hurt her hip. Jim took her to the ER, and, sure enough, her hip was broken.

There was surgery - a partial hip replacement. There was residential rehab at an assisted living center. And then there was the next fall. She somehow got twisted around, getting out of bed and went down on the nice thick carpet. The steel rod that ran through her thigh rapped sharply against her femur, and bingo! A broken femur. More surgery. More residential rehab, in a different assisted living center.

During one of her hospitalizations, a nurse noticed that a nick on her toe was not healing and that she was developing a bedsore on her heel. She eventually ran out of hospital days and residential rehab days on her medical insurance, and they sent her home with me.

It fell to me to clean and debride her toe and heel every day. That terrified me because I was so afraid I wasn't doing it right. The home nurse who taught me how came a couple of days a week for a while, and then that service ran out and poor Addy was left to my inept ministrations.

We were still having fun though, and I introduced her to the wonders on online shopping. She loved being able to do her Christmas shopping that way, and when the parcels arrived, she supervised my wrapping. It was almost like an early Christmas for her.

We had Christmas, laden down with ham and children and presents, and then she got pneumonia. She was back in the hospital for New Years, and Jim had to sign the papers for her to have part of her foot amputated. Her toe had not healed, and gangrene had set in. Once they started operating, they decided that they should remove her entire foot, because of the sore on her heel. By the time she was back in her room, her leg was gone, halfway to her knee.

More residential rehab. More surgery, because the amputation wouldn't heal. By then, her leg was gone to just below the knee.

After the second amputation, I went to pick her up at the assisted living center to take her to a follow-up appointment with her surgeon, and found her with her head down on the table, unconscious. The nurse didn't want to call an ambulance - after all, we were on our way to the doctor's office anyway, right?

We never made it. I called ahead, and Dr Surgeon told me to take her to the ER. He never did meet us there, as he promised, but the hospital admitted her anyway in order to monitor her and tweak her incredible cocktail of medications.

The next time I saw Dr Surgeon, he was handing Jim another sheaf of papers to sign so that he could further amputate Addy's leg - above the knee, this time. For "pain management." By then, Addy was half out of her mind, vacillating between morphine and agony. "It's trying to heal," said Dr Surgeon during his daily inspection.

Addy, ever the optimist and too blind to see the wound, would get to thinking that it was all getting better and they would be fitting her with a prosthetic any day and we would be off to the antique mall. I was trying to figure out why he was lying to her. It finally occurred to me that she was dying, and he knew it didn't matter. The same thought occurred to Jim, also, because he refused to sign for the above-knee surgery.

I cornered Dr Surgeon and Dr Internist during rounds the next morning. Jim and I were pretty much living at the hospital by then. ("Hi honey. How was your day?” “Oh, excuse me nurse...") I asked Dr Surgeon exactly what he meant by "trying to heal." I asked Dr Internist what the prognosis was. I wanted to know the truth that Jim couldn't face. Addy was not going to get any better. I challenged the both of them to tell Addy what they had just told me.

Catching her in a moment of lucidity, they explained the situation as I glared at them from the doorway. She nodded sagely. When they left, she looked at me and said, with a mere hint of her lifelong feistiness, "Now, we're going to fight this thing."

God forgive me, I couldn't stand it. I said, "With what, Addy? You've been fighting and fighting for months. There's nothing left!"

Hours later, I heard her tell the nurse, "I want to die."

I am still chilled to the bone by that.

When she told the nurse that, it set in motion another procedure. Hospice.

The little volunteer bustled up to me with her huge glasses and shiny briefcase and began asking me questions. How much was she sleeping? When did she last eat? When I explained that the nurse and I had mashed her pills up in some Jello and fed it to her a few hours before, her pencil poised above the legal pad, and she blinked owlishly at me. "Oh," she said, "if she's still eating, she could last for a month or more. Our program is only for two weeks."

I lost it. Dearly Beloved, I lost it.

In retrospect, I feel sorry for the volunteer, who must have been very new. "WHAT?" I said, "Do you mean she's not DEAD enough for you? I'll tell you what! You don't know Addy! When she puts her mind to doing something, it gets done!"

I believe I further invited her to pack up her pencil and her briefcase and get the hell out, and that I had been coping all along and would continue to do so. She whimpered pitifully and offered to "crunch some numbers" (yes, she really did say that), and see if she could get Addy into her "program."

Well, she crunched and she crunched, and by then it was Saturday, and the on-call doctor at the hospital wouldn't sign off on the hospice program because he "didn't believe in euthanasia." Addy would have to endure until Monday, when Dr Internist, who had already signed for the hospice program, would be back and could sign for it all over again.

Of course, I was right. Close to dawn on Monday morning, Addy gripped my hand tightly and stared into my eyes with a surprised expression, and died.

* * *

I learned a couple of things. One is that insurance is a wonderful thing. Another is that doctors will do anything and everything to you and for you that your insurance allows, whether or not it will improve your quality of life. A third is to never underestimate the resourcefulness of a feisty and stubborn woman.

I miss her. She was eighty-one.

EDITORIAL NOTE: While I am away, The Elder Storytelling Place is on hiatus. You can read past stories here. And if you are inclined, you could send in stories for publication when I return. All elders, 50 and older, are welcome to submit stories for this blog. They can be fiction, non-fiction, poetry, memoir, etc. Instructions for submitting are here.

Comments

I may moan about the National Health Service here in the UK, but reading this I wholeheartedly thank the Labour Government of 1945 for its existence.

Surely the concept of caring hasn't entirely disappeared from US medicine?

You are incredible to do what you did. You are to be admired in the face of stupidity by health professionals (my profession).

Health insurance coverage is not everything, at least now. Medicare coverage is not free as most people believe. It is not entitlement; it is a mere small dose of coverage that needs expensive supplementation by other coverage.

Doctors are not gods...they just think they are. This incredible woman got the worst care possible administered by these so called healers. You and your husband did more than any 10 doctors could have or did. Addie was lucky to have you both in her life.

Hospice is 6 months not 2 weeks. And almost every single insurer covers it, including Medicare.

There needs to be more health advocates out there to help people navigate the system.

At least, she is at peace and without pain now.

How sad - but I admire her feisty spirit.

I have a friend who is dying this way right now. He has both Crones and AIDS. He is bleeding his innards out, slowly and sometimes dramatically. No money. Essentially homeless, though social service places him in a residence hotel each month.

He is hospitalized about once a week for a day or two or more. They more or less stabilize him, then put him out. Medicaid doesn't cover his drugs, so he leaves with a sheaf of prescriptions he'll never fill. He staggers around a bit -- and ends up back in the hospital.

We are trying to make him go into a hospice which might be available but he has seen friends go and says they just turn silent and are gone. So he fights on, but there is no winning, only ugliness and pain.

The medical and social service professionals who deal with him are actually trying to help, as far as I can see, but there is no real recourse with a person like this.

And individuals can't help. Obviously we need national health care -- and to resuscitate the idea that sick people are a community responsibility, not a profit center. We can't do away with disease, death and maybe even some poverty, but we could certainly reduce the sheer indignity of the inevitable.

This guy is about 40 ...

Ronni -- God (if there is one) bless you and Jim.

What a real story. Thank you for writing it so well.

Just as a note, unfortunately we do not understand the medical system for our older folks until we get involved at such a time. Yes, Medicare hospice is for 6 months, and it can be renewed. It's not "euthanasia" but actually a very helpful program for the patient and the family. We all have to be advocates, and the wrong part of it all is that at the same time all our resources are being used to help our loved one, we must spend much of that energy trying to negotiate the system.

What a beautifully-written story. Yes, I agree with Ian that our NHS, with all its faults, is something to be grateful for.

A further note about the "euthanasia." In hospice, more morphine is allowed, and the on-call doctor thought that would kill her. I turned out to be moot, because, as I told the volunteer in the first place, when Addy put her mind to something, it got done.

I knew the "two weeks" that the volunteer told me about had to be wrong, but figured that the hospital official who called in the hospice group might have estimated that amount of time as being what Addy would need.

Thanks for your kind words.

First, Ronni, you are an angel and Addy was so fortunate to have you and Jim. No children could have done a better job than you both did. Good friends like you are a godsend to elderly people.

I hope it is different now, but when my husband was terminal there were only 9 beds in the Hospice wing of one hospital PERIOD. You did have to be two weeks from death to be admitted. I got my husband in the hospice program and the nurse would come to our house, but he was not eligible for a hospice bed. After he had to be put in the nursing home his doctor never visited him one time. My daughter had to get the morphine (that I insisted on) at the pharmacy and take it to the nursing home. By the time they decided he was ready for hospice (kidney failure) he died. Our system is horrible.

Thank you, Ronni, for this powerful story. I've been through the medical establishment and hospice care with a loved one, too. The emotions, choices, decisions, sudden turns, doubts, the very good/very bad world of insurance - bless you for all you and Jim did for Addy. The humiliation of no one caring is said to be the worst experience of all. Besides everything else you did, you gave the Addy that most wonderful experience and gift - of being loved and cared about.

How very very lucky Addy was to have you and Jim.

Please allow me to take this minute and encourage anyone who hasn't appointed a health care proxy and made their "advanced care" directives to do so RIGHT NOW! I like "Five Wishes" as a starting point.

Ronni, you and Jim are angels. Blessings upon both of you. I live in fear of the sort of thing that you just described. It's bad enough to get old and frail but the stupid rules are unconscionable. This strengthens my resolve to get things in place so someone knows what I want done in such cases and make it legal.

I can't add much to the comments already made, because I agree with all. Addy was lucky to have you and Jim. It is really difficult to get the medical establishment to bother with dying old people who have multiple health problems. I found this out with my mother. I guess she was lucky that she lasted only 3 weeks from her fall.

How fortunate your neighbor had such good friends as you and Jim. Everyone needs an advocate dealing with the health care system, and frequent visitors when in hospitals, various care facilities as your story so graphically demonstrates.

Quality of care does have some basic meanings and guidelines that are applicable to everyone. There also are some issues that individual patients want treated differently from each other depending on their personal perspective that can be influenced by various factors when it comes to life ending.

Specifying our wishes in advance of that time is so important for ourselves, those who care about us, and our health care providers.

The comments to this entry are closed.