The Call

The call was from my sister Lorraine, “Lee, please call me, I have such severe pain in my back, I’m worried, I don’t know what to do.” She called again a minute later with the same message.

I didn’t hear the calls, I had disconnected my landline phone. My cell phone was in the living room, I was asleep in the bedroom.

Robocalls assault our homes like incoming artillery. Again and again, the bombardment continues…to the maddening disruption of our peace.

One night last fall, while trying to watch a movie on TV, our landline phone exploded five times with robobombs. I was determined to stop it.

The next day I notified all family and friends that henceforth we could only be reached through our cell phones. Then I disconnected our landline.

Why should I have had to do such a thing as disconnect my phone? Why should I have to construct a home environment to deter these phonic bombs? What has become of our right to be left alone in our pursuit of happiness?

The calls were less frequent on our cells so all went well…for a while,

But one night Nov. 29th, about 12:30 am, Lorraine’s call came in on my cell and I did not answer and I was Lorraine’s health care proxy.

Cheryl and I didn’t know about the calls until we heard the messages the next morning.  Lorraine, a widow with no children, was having a heart attack but hadn’t realized it.

Now, Lorraine, though 81, was neither fragile nor sedentary: she traveled to Italy recently, she bowled in two leagues, she was the Hospitality Leader at her church, St. William the Abbot in Massapequa, preparing the breakfasts for the post-Mass gatherings of the congregants. She made sandwiches for the homeless weekly and was quick to host countless family-get-togethers at her home. She was the whirling, go-to center of our extended family… and her church.

Lorraine had never been admitted to a hospital in her life. In 37 years working with the VA hospital in NYC, she never went sick one day, retiring with the accumulation of 2,000 sick days.

Unsuccessful in reaching me, Lorraine called her friend with whom she had bowled that night. Her friend’s husband soon arrived and took her to the hospital of her choice, nearby, St. Josephs in Hempstead.

Heart Attack

There, an X-Ray was taken of her lower back. The staff could find nothing amiss and were about to send her home. Lorraine later told me, “They wanted to send me home again.” But Lorraine insisted something was wrong, the pain was accompanied by unexplained fatigue.

Women, as most of you know, often have very different symptoms of heart attacks than men. Symptoms can be the same as for men shortness of breath, nausea, pain in the chest, but for women, it can also be back pain, jaw pain, stomach pain: https://tinyurl.com/Hrt-atck-symp A nurse told me it can even be eyelid pain. Lorraine attributed her back pain to bowling. She bowled that very night.

At Lorraine’s insistence St. Joseph’s did a blood test and another X-Ray then concluded she was having a heart attack. They transported her to St. Francis Hospital in Roslyn, a very well respected hospital that is known deservedly as The Heart Hospital.

Cheryl and I went to St Francis that morning where I learned that Lorraine had been going into congestive heart failure upon her arrival and was now undergoing quadruple bypass surgery. The admitting doctor told me if she hadn’t come in when she did she’d be gone. Lorraine survived the bypass and was recovering: sitting up, chatting, eating. We were surveying rehabs for a very short term stay.

In the meantime St. Josephs hospital had faxed information to St. Francis hospital that the lower back X-Ray they took revealed a large aneurysm in her abdominal aorta.

On Dec. 17 Lorraine had her aneurysm operation. We thought it went well. We hoped she’d be out by Christmas. Nov. 29th’s event was now stretching toward Chrismas.

Visiting characters at Lorraine’s room as Christmas approached.

Second Heart Attack

But she had developed low blood pressure and there was evidence of internal bleeding. So they decided to do an endoscopy to determine the cause. But they had to abort the endoscopy attempt because Lorraine’s blood pressure had gone so low she went into cardiac arrest, again.

Cheryl and I went to visit Lorraine for what we thought would post-endoscopy visit, but upon nearing her room we were met by a male nurse who said, “We worked on her for twenty to twenty-five minutes,”  he said. “We wouldn’t give up.” Lorraine survived this second cardiac event.

A doctor later told us that during the CPR  the chambers of her heart were actually empty for a period of time and they were not sure the brain had received enough blood to avoid damage. They were monitoring her carefully. She now had a ventilator down her throat and pacemaker assisting her heart rate.

We were told by one lady doctor that Lorraine was in a very perilous condition and that consideration should be kept in mind for a peaceful death with dignity. She said that her condition was so precarious that the removal of the pacemaker pads could result in her death as early as a day.

The falling blood pressure was found to be from a bleeding ulcer in her duodenum. A surgeon operated and stopped the bleeding.

I was asked my thoughts on DNR, Do Not Resuscitate, since Lorraine’s condition was so tenuous. Another heart attack would make CPR fruitless now so a natural death might be better. I agreed to the DNR.

However, her cardiologists were not so gloom and doom on the situation. They saw no reason she could not recover and go to rehab and home. Her heart looked healthy. The prognosis information was polar to what had been given before by other staff.

The pacemaker pads were replaced by wires that went into her heart.  Lorraine was being fed by a nutrition line that went down her throat to her stomach. They learned that her right lung had collapsed due to the rigorous CPR compressions so a balloon was placed inside her lung to reinflate it.

Recovery

Lorraine was slowly recovering to the point where her intubation, the vent which went right down her bronchial tube, was removed. I had been warned by palliative care staff that if Lorraine had again suffered difficulty in breathing, I’d need to realize that re-intubation would likely have a bad result. Lorraine could live a life in a nursing home hooked up to a vent, and that maybe I should consider a “peaceful death with dignity.”

But Lorraine did very well and she was placed on a face mask that supplied the needed and measured oxygen. Soon she was slowly being weaned off that mask.

Lorraine lifts a weight, a can of Coke, her sister Mary provided, to assist in Physical Therapy

Relapse

Suddenly, one day, Lorraine’s skin looked bad, cyanotic, her oxygen level dropped.

I was asked about re-intubation. I had asked Lorraine several times if she wanted to continue with all the effort and machinery. She said she did.

Lorraine has been known to be pretty stubborn when she had her mind made up. Sometimes one’s suggestion that she do something in a certain way which would be contrary to her way one could be met with Lorraine’s outstretched arms, with fingers splayed saying, “I don’t like to be told what to do!”

She was a real fighter. She would not give up. I told her she’d have made a fantastic Marine. So I consented to the reintubation which ultimately led to a trach or tracheotomy, a plastic tube that exits the bronchial passageway through the front of the throat.

If Lorraine went to rehab in this condition she’d need a vent bed in that facility which is very expensive. The best facility in my research of the various vent rehabs cost $30,000 per month! Other rehabs were almost as much.

Financial Ramifications

One has to considerably spend down their assets to become eligible for Medicaid. IRAs and trusts are exempt. Half the value of their home might be at stake as well. Seniors would do well to consult an elder attorney long before the need arises.

Actually, I think the general public should get classes in this stuff so we are not so overwhelmed when they occur, as they so often do. Maybe a survey course in college or even High School. I learned that Medicare and private insurance will cover a patient for 100 days in rehab. But after that, the patient or the family must pay unless Medicaid is granted.

I consulted an elder attorney ( for an $8,500 retainer ).

For nursing home costs, Medicaid, in reviewing applications looks back five years of the patient’s financial records. Checks in large amounts given say for pre-death inheritance gifts, might be deducted from the total of the recipients half of the value of the home. Withdrawals of $2,000 or more from bank accounts are questioned. These withdrawals or transfers are looked at as potential asset-hiding to gain Medicaid. IRS reports going back five years must be submitted.

In the meantime, one vent rehab wanted to be assured that, pending Medicaid, they would be paid. In our instance the rehab wanted the family to guarantee $88,000 of our own money. After consulting our elder attorney, I did agree and signed to that guarantee. But the guarantee was later reduced to $54,000 because we had an elder attorney to prepare the application so it would be more likely to be approved.

Lorraine was now on a trach with a nutrition line to her stomach.

Darkness And Sunshine

I had a very hard time sleeping through all this, tossing in bed night after night watching the tornado of medical terms and legal terms spin before my eyes. I wondered if I did my best for my sister. I was told again and again she was a very sick lady. Was I sentencing Lorraine to a trach-anchored life? A life without quality? I wasn’t there for her when she called on the phone, was I there enough for her now? I could see her eyes in the night, pleading eyes, sometimes with a tear at their corners. Sometimes, the eyes, they can be so articulate.

The cardiac doctors had continued to paint a positive prognosis. These doctors said her heart was now “basically normal.” There was no evidence of brain damage. They were like rays of sunshine to our family. And I told them so, using those sunshiney words. Lorraine wanted to continue, her choice was what mattered, it was really out of my hands. But not out of my mind. Although I felt I was going…out of my mind.

Further Complications

Then things got worse.

Lorraine developed a blood infection from one of the abdominal wounds of the aneurysm operation, then also of the liver. The liver was infected from filtering the infected blood. She was given multiple antibiotics. There was fluid around her lungs, one lung required a pleurX drain. The other required extraction of fluid by use of a needle that would suction the fluid. But the doctor doing the latter procedure misread the screen which she thought showed fluid but was actually the lung and pierced the lung with the needle.

The doctor said this does happen sometimes in these procedures, indeed I had been advised of this possibility when I had given consent. She said it was the first time it had happened with her in ten years of experience.  The puncture did heal and the lung recovered.

So, on Lorraine fought. Visitors came, when they were allowed, to offer support. Fr. Bob and Fr. Augustine from St. William the Abbot church made multiple visits. Church friends, neighbors, bowling buddies, all visited or sent cards or flowers or did all three. One gracious neighbor picked up Lorraine’s mail from her mailbox daily for me…for over three months. I didn’t trust mail-forwarding in this situation. Things get lost I’ve found.

I drove from Long Beach to St. Francis Hospital in Roslyn every day for over those three months. The driving, the dealing with medical input and financial concerns was overwhelming.

The sleeplessness continued, I thought: Was all this effort leading to life for Lorraine hooked up to vent, in a nursing home? Going through her assets and home? Would she have been better off not having survived that CPR? These were awful thoughts. I regretted pondering them.

I took sleeping pills which only made me groggy the next day when I needed to be alert.  My routine life came to a halt. I stopped writing my blog, taking photos, exercising, swimming, participating in all social media since the first day Lorraine became ill. I lost weight.

Camaraderie

Some of you dear readers have told me in the past of your own similar experiences with family, some which lasted way longer than mine. I really don’t know how you coped. Perhaps you’re much stronger than I. Life sometimes brings together strange camaraderies. So many ICU waiting rooms, so many hallways, so many families with their own deep frowns, sighs, tears. Sometimes we exchange support, we are a brotherhood simply because we can relate in these most trying family times.

Hope Fulfilled

One day the sun began to rise upon Lorraine.

Miraculously: the fever ended, the infections succumbed, the feeding tube was removed and eventually the trach was removed. She was sitting up daily, she was standing again and again. She wanted to walk. She asked for more and more physical therapy visits from PT staff. They accommodated as best they could. While some hospital patients turned away visits from PT staff Lorraine demanded more.

St. Francis Hospital and Lorraine had conquered the medical travails. The staff said the family support: siblings, nieces, nephews, step grandkids, church friends, bowling buddies, was extraordinary. They said this helped significantly in Lorraine’s progress.

On March 8th Lorraine was discharged from St. Francis hospital. She had been in the ICU for three and a half months. Nurses hugged her,  laughed with her, wished her continued success. Lorraine was transported to a nursing home for short term rehab without a need for a vent bed.

She did very well in the rehab’s PT: She walked 100 steps a day, climbed stairs, practiced entering and exiting a car. Our family kept rooting her on, hoping she’d be home by her birthday, Apr. 15th.

Three sibs, Lee, Rod, and Mary, in rehab, toasting Rod’s birthday with Lorraine. We hoped she’ d be home for hers soon

Not To Be

I started writing this blog post in March to let you know of, and maybe learn something, from my experiences. But maybe also to show that determination, tenacity, could deliver a happy ending. But just as I typed the last paragraphs, on March 31st, I got a text from my sister, Mary.

Mary was at the rehab where Lorraine was recovering. She texted that Lorraine had a 102 fever. The infection that she and the hospital staff fought for so long had returned.

Apr. 3rd Lorraine was returned by ambulance to St. Francis Hospital. And on April 9th so very sad to say, my sister, Lorraine died from the MRSA infection.

Yes, my sister, Lorraine is gone. But as I wrote in my journal and this humble blog these many years, she wrote on this troubled globe. She wrote in her acts of generosity to family, in kindness to her neighbors, in service to her church’s congregants, in love for the homeless for whom she made sandwiches every week. I think we all write in our short stays on this fickle blue planet. And when we are gone our message lives on.

God bless you, Lorraine, and thank you, for those messages from your heart.

Re: MRSA, from the CDC, the Center For Disease Control:https://tinyurl.com/gsw7knh

Better times. My sister, Lorraine and me, 2012, Sarasota FL

Be well, my family and Friends,

be very well,

Leebythesea