Whenever an elderly loved one has a health crisis, family dynamics and issues suddenly become more pronounced. You've all heard the stories of families torn apart at the end of their parents' lives as they all squabble and bicker over every detail of the care plan, or even go so far as to start divvying up the family heirlooms. Usually there is one caregiver which emerges as the most reliable, hard-working one of the family. Usually this caregiver is under-appreciated, or even made the scapegoat of the situation. I hope this never happens to you.

I want to dedicate this article to thanking my brother for doing such a marvelous job of caring for our father for the past six weeks, and give my readers hope that families can pull together for the best outcome. Though we had a few minor misunderstandings along the way, our family has gotten through a tremendous health crisis, and my brother did all of the physical work. No one could have done better, not even a professional care manager.

From the day of my father's aneurysm operation on December 28 th , 2001, until he was sent for rehabilitation to his hometown three weeks later, my brother, his wife, and my dad's friend Mary never left his side. Gary and his wife, Suzy, left their home, Gary's job was put on hold, and the three of them took turns spending 8 hours at a time with my father so that he was never alone. This surgery and subsequent recovery, which should have been resolved within a few days, turned into the ordeal of my father's life. He spent two weeks in acute care in Wichita, and four more weeks in a rehabilitation bed in his hometown hospital while the medical team was unable to pinpoint why he was unable to eat enough food to sustain his recovery. He became depressed (who wouldn't) which did not help, and was also diagnosed with chronic lymphocytic leukemia which I am sure was interfering with his ability to heal. He was on multiple medications for the first time in his life and he has always had the opposite reaction to medications than their intent. Oh, and he also came down with a bacteria in his digestive tract which is commonly passed around in hospitals.

My brother, the second oldest in my family, has been in the grocery business all his life. His father's only son, he and Dad are pretty close. Gary lives about 2 hours away from Dad, so their visits aren't that frequent, but more frequent than his daughters who all live at least 1,000 miles away. The grocery business has taught Gary how to be a good manager. He put that skill to work as he managed my father's care and discharge plan for the past 6 weeks.

Starting with the discharge from the Wichita hospital to his hometown, Gary did not let grass grow under their feet. They had to pay privately for an ambulance, due to my father's weak condition, for the two-hour trip from Wichita to my hometown. They had to consider the time it would take to get there, the need for a daytime drive (no four-lane highway between the two cities), and the stress on my father. Starting with an expected 8 am discharge, Gary's first job was to get the hospital staff to understand their need to leave once my father was mentally and physically ready.

"Well, the doctor can't see you for a couple of hours because he's been delayed in surgery," the poor nurse telling my brother this had no clue with whom she was dealing.

"Huh-uh," my brother said, very nicely. My brother couldn't be mean and nasty if he tried; he can just be very nicely insistent. "We're going to get another doctor to sign his discharge papers, now go and find one and get that paperwork in here."

Thus, my brother made sure that the transition was much more smooth than it would have been without him.

It was at about this point that my brother called me for advice. That's another sign of a good care manager -- you ask the experts for advice. Gary knew that I deal with discharges a lot with my clients, and that I know what Medicare will pay for, and what has to be paid out of pocket in most cases. One night we talked for at least 90 minutes as he took copious notes. Some of the things he needed to know were: What services will be covered by Medicare when and if he goes home?

 

•  Skilled services, such as wound care, breathing equipment, physical and occupational therapy, and medication education

•  Nursing services to attend to the above on a weekly basis, therapy two or three times per week

•  Home health aide services during skilled care time at one to three one-hour visits per week to assist with personal care.

What we were facing, however, was a very weak father with no family in town. Daddy was most likely going to need 24-hour care for at least a while. Gary was flabbergasted, as many people are, to learn that Medicare (nor most other major medical or Medigap policies) does not pay for "custodial care." That would have to come out of Daddy's pockets.

"Liquidate his assets if you need to, Gary," I instructed him. "He has enough in annuities to pay for several months at home.

And what if he was going home "not to get better." Gary and I were debating the hardest questions of all -- what if he didn't get better? We were going to bring him home regardless. I told him about Hospice. Medicare will pay for increased home care if hospice is warranted -- usually a 6-month prognosis is the test for hospice coverage. We needed to plan for the worst, in case it happened. We needed 24-hour caregivers, possibly some home equipment such as a commode and a shower bench, and these caregivers had to be reliable. I gave Gary a lot to chew on, and a lot to follow up on:

 

•  Contact the local home health agency (there was probably only one in town) and inquire about the availability of 24-hour caregivers.

•  Check Daddy's retirement benefits -- as a retired insurance agent he had once told us that he had some insurance that covered custodial care.

•  Look for a CPA or some kind of company or person in the area who would handle paying non-agency-related caregivers so that taxes could be taken out, covering Social Security, Disability, and Worker's Comp.

•  Talk to Dad's homeowners insurance person to make sure he had umbrella coverage -- informal caregivers who injure themselves while working for you can wipe out a person's long term care funds.

All of this discharge-planning took quite a bit of my brother's free time. By now, he had gone back to work, visiting Dad every 3 rd day when he had 2 days off. He and his wife neglected their house work, their hobbies, and most likely themselves to some extent. All caregivers do.

Then there was my dad's rehabilitation time. My brother has a special way of laying things out in a logical sequence of cause and effect. He was able, several times, to get my father back on track to recovery. My father was giving up, I believe. He had had enough of being sick, of being unable to keep food down, of feeling lousy all the time. My brother would give him this pep talk at those times. He got some of the wording from me during our Medicare talk.

"Now, Dad, I told you what Debi said! If you're not trying, not eating, not cooperating with therapy, and not making progress, they will kick you out of here!"

At one time the physician even got in on the act, threatening to send my dad down the street to the local nursing home since he had appeared to give up. This bluff was called when my brother assured Dad that we would not let that happen. We were convinced that part of my dad's recovery problem was influenced by his environment. His own nurse described his room as being "morgue-like." He missed his dog. He missed his girlfriend. And Gary really caught on to something when he realized that no one would want to eat off a tray every day, using little paper-filled salt and pepper envelopes. Gary followed through with his idea and brought Dad a table cloth, some silverware, some cloth napkins, and real salt-and-pepper shakers. Then, during that ice storm that we got here in Ohio a few day later, he drove all over town trying to find an open restaurant so he could get him some tater tots and chicken nuggets. My dad started turning the corner after that. He tried harder, he ate better, and he roused his optimism. Thanks to Gary, and thanks to his own stubborn stamina.

Gary's plan had included that I come home a few days after Dad got home, to make sure that things were running smoothly. I wanted to see him. I wanted to assess my dad's condition for myself. Would he be able to drive again? Would he ever be able to live alone again? Would I really, as an impassioned loved one, be able to be the objective professional and assess Dad if those facts existed? If need be, I would stay with him for a week, and my sisters would come and take turns as well, so that we could save on some of the 24-hour care costs. At some point I realized, though, that I was not cut out to be a hands-on caregiver. If he went home weak and debilitated, I would not be the one he would want to bathe him. Besides, I would need to assess the reliability of these paid caregivers. I selfishly worried about this trip -- I hate to leave my family; it's almost impossible to leave my clients. I felt like a heel, but I also knew that if Dad really needed me, and if they asked, I would drop everything to come and help. I told Gary that every chance I got. He believed me and asked me to wait until he did need me.

We even looked into the future, Gary and I, as he told me about his plan to have Dad move in with them if need be. Gary and Suzy went around town looking at duplexes one day.

Dad went home on February 6 th with 3 caregivers from the neighborhood. Turns out there is no agency in town that can handle 24-hour care at all. One of the caregivers was a male nurse that tended Dad in the hospital. The very night he went home, he stayed up later than he had in the hospital, watching his favorite television shows. His dog slept with him in his bed. He told me that he woke up hungry the next morning for the first time in weeks. He asked me not to visit him until May when he would hopefully be feeling better. "Besides, you know how unpredictable the weather is here in the Midwest during the winter."

"Dad, the weather is irrelevant if you need me," I told him. "I'll come no matter what; all you have to do is call." And, although I meant it with all of my heart, I can't help feeling guilty at the relief of not having to go right now, at not having to see how debilitated he looks.

Anyway, this is for you, Gary. All my gratitude, all my thanks, for ever and ever. If you ever feel unappreciated, I sincerely apologize. I could not have been there for 8 weeks. If it had been required of me, I would have been so distracted at being away from my family, away from my job, that I would not have been the devoted and attentive care manager that you have been.

Whatever decisions you and Dad have made that I may disagree with are minor and immaterial in the scheme of things. You got Dad home and you kept him company until he got there. You gave up your days off, neglected your home and kids (grown though they may be), and you put Dad first. Just like he did for us for 30 years. My sisters and I will never forget what you did, and that you did it so well. Thanks, Gary.

Now, readers. Take a moment to think who in your family has done the most sacrificing for your parents. Think about how your own life -- your spouse, kids, job, hobbies -- would have had to change if that caregiver hadn't done these things. Set aside your differences and your minor disagreements, and give them a call, write them a letter, or send them some flowers.

If you're close enough geographically, offer to make them dinner. Offer to stay with your elderly loved one so the caregiver can have a day off. Better yet, don't' offer. Caregivers often say, "Oh, don't bother, no thanks." Just show up with a book of crossword puzzles and send them out shopping. Give them $20 to spend; caregivers often give up their own jobs and have no spending money of their own. Ask them how they're doing. Encourage them to go to their own physician for a checkup if it's been awhile. Caregivers die more often before the person needing care due to self-neglect. Think about how your own life will change if that happens.

Take care of the caregivers. They are the true angels on Earth.

Debra Sorensen, MSW, LISW, CMC, is a professional care manager and owner of Debra J. Sorensen & Associates Inc., a private geriatric care management company serving Northwest Ohio and Southeast Michigan. She can be reached at 419-367-8835 or e-mail Debra@professionalcareforyou.com.