Guiding you through the elder care process: Ten Guiding Principles to help you survive the

caregiving storm with dignity and sanity, while maintaining your life and career.

 

By Ben Neiburger

Part 1 — A Love Story

 

Let’s start with a love story.

 

About 10 years ago, a family came to me asking for Medicaid planning advice. Medicaid planning is

an estate planning and public benefits planning technique that can reduce long-term health care costs.

This technique uses the Medicaid program to pay all or a portion of a person’s long-term care benefits,

instead of completely exhausting assets.

 

Mike shuffled in with his son Jason one sunny morning with his head hung low and a look of utter

exhaustion and frustration on his face. Jason was holding on to his elbow. As they sat down, I asked

Mike what was wrong and he looked at me.

 

“My love, Laura, she hallucinates,” he said.

 

“As I drive down the road she claims to see her mother and grandmother on the corner, and I tell her

they’re not there. Then she yells at me saying they are, and one minute later, at the next intersection,

the same thing happens again. It’s driving me crazy. The doctor says she has Alzheimer’s disease.”

 

Mike slammed his fist on the table in frustration and said, “I’m not going to put Laura in a nursing

home.”

 

Then, Jason looked at me and shook his head. His father looked down at something on my desk,

distracted.

 

“Mike, how’s your heart?” I asked.

 

“Oh it’s bad. I’m on medications and I feel so stressed,” Mike responded.

 

“Okay, how high is your stress level?”

 

“My stress level is terrible. Laura wakes me up three or four times a night. I’m afraid she’s going to

wander on the street, so I have to get up and make sure she doesn’t go downstairs. Whenever I hear a

noise, I get up to make sure the door is locked so she doesn’t go outside. It’s driving me crazy.”

 

“Then you’re not sleeping well?” I responded.

 

“No, my sleep is terrible,” Mike said.

 

“Mike, are you aware of what caregiver stress is?”

 

He responded, “Yes, I have lots of stress.”

 

“Mike, did you know the statistics say the healthy spouse dies before the ill spouse almost one third of

the time?”

 

Then Mike looked up, his eyes opened wide by surprise, and he asked, “Really?”

 

“Yes,” I responded. Let me ask you, how well can you take care of Laura when you’re dead?”

 

Dead silence. A look of shock overcame him.

 

“Mike, I’m sure your children will do a fine job taking care of Laura, but nobody knows her as well as

you do—nobody can care for her as well as you can,” I explained. “There is no better advocate for her

happiness and safety than you. So it’s your job to take care of you first. Once you are set, then you can

make sure she gets the best care. To do this, you need to change your role from being her primary

caregiver to being her caregiving advocate. Her caregiving advocate will make sure she gets the best

care there is.”

 

I explained to Mike, that because of his caregiver stress, he needed to put Laura in a nursing home so

he could keep himself healthy and make sure she received the best care.

 

“I know you’ll visit her almost every day and I know you’ll be looking over her,” I said. “Remember,

since her short-term memory only lasts a minute, she isn’t going to remember if you’re there or not.

She isn’t going to remember if you visited or if you didn’t visit. If she gets mad at you for not being

there, she will forget she is mad a minute later. So, you can visit periodically. You can make sure the

staff is treating her right. You can take the time you need to keep yourself healthy, to visit your

friends, to spend time with your children and grandchildren.”

 

Mike placed Laura in a nursing home within two weeks. The home was in a plain looking brick

building, nothing fancy, but it was clean, the staff was friendly, and there were always fresh flowers.

We were able to use some Medicaid planning techniques to exclude Mike’s IRA, car and the family

home from Medicaid’s spousal asset rules. This means that those assets did not count against Mike or

Laura for Laura’s Medicaid eligibility. Accordingly, Laura immediately became eligible for Medicaid

benefits to pay for her room and board at the nursing home.

 

Two months after Mike admitted Laura to the nursing home, the Illinois Department of Human

Services, Illinois’ Medicaid agency, sent Mike the letter approving Laura’s Medicaid. I called Mike,

and he came into my office to see the approval letter. After he read it and I explained what it meant,

Mike looked at me and smiled. It was as if the greatest weight in the world was just lifted off his

shoulders.

 

When Mike and Laura’s children were growing up, Mike worked and Laura kept the house and raised

the kids. He worked as a printer for a commercial publisher and put in long hours when his kids were

young. As a result, Mike wasn’t as close to his children as he wanted to be. In addition, once he

retired, Mike was caring for Laura and unable to spend the time he wanted with his children and

grandchildren. After he put Laura in the nursing home, Mike found that he could rest and focus on

himself and the rest of his family. He started playing golf again with his buddies and he started

spending time with his family. He would go to birthday parties. He would babysit. He would take the

grandchildren out. Mike reconnected with his family. This was the lull before the storm.

 

Two years had passed when Mike called me and asked, “Ben, do you remember that estate planning

you prepared for me when we did the Medicaid planning for Laura?”

 

“Yes Mike, I remember that.”

 

“I want to know if all my affairs are in order.”

 

“I think they are.”

 

“Well, I want to be sure. I saw a doctor recently because I was experiencing a lot of cramping in my

hands and feet and some muscle weakness. They ran a number of tests, and I just got the results. I have

ALS.”

 

ALS is a disease that leaves the mind alone while gradually degenerating the neurons in the brain that

affect muscle movement. With ALS, most of the person’s motor neurons degenerate and die. ALS is

inevitably fatal, as it eventually leaves the sufferer unable to move and breathe. There are drugs

designed to slow this process down, but the disease will run its course.

 

While planning for Laura, Mike not only became educated in which public benefit options were

available to his family, he also did some special planning for himself. Statistics show that the mortality

risk for a caregiver spouse is 62% higher than for a non-caregiving spouse.[1] So Mike completed a

special estate plan that would disinherit his spouse if he died first, since any money Laura would

inherit would need to be spent on her care. Under his estate plan, if he died first, the children would

have the use of his money to support their mother and buy her things Medicaid wouldn’t pay for. Mike

had his estate plan designed to accommodate any disability he might develop, so didn’t have to make

any changes to his estate plan after his diagnosis.

 

During the planning process for Laura, Mike unknowingly applied many of the elder care principles

this booklet covers. He hired professionals to teach him what he needed to know to make the most

appropriate decisions for his family. He planned ahead. He took time for himself. Because he was

proactive and we sheltered his income and assets from Laura’s long-term care costs, Mike was able to

maintain his dignity and independence as the disease gradually worsened. Because of the work we did

protecting his assets and income from the costs of Laura’s long-term care, he hired a caregiver to live

with him in his house to help him with the tasks he couldn’t do himself. He had enough money so that

he didn’t have to rely on his children. His children did not have to put their lives on hold to care for

him. Instead, Mike’s children could check on him and his caregiver and make sure he was getting good

care. They could spend quality time visiting him since they were not the primary caregivers. Because

there was no caregiver stress for the children, the siblings’ relationships remained strong and the

family stayed close.

 

Mike went on like this for another year. He still went to family birthday parties, although he couldn’t

babysit as much. His caregiver carted him around to all the places he wanted to go. Then, on a sunny

fall day when the leaves from the trees began to fall, Mike called me again. His frail voice asked,

“Ben, are all my affairs in order?”

 

“Mike, if you did everything I told you to do it should all be fine,” I responded.

 

“Okay, I think I did. Thank you for all you have done. Goodbye.”

 

That was the last conversation I had with Mike. He died several weeks later.

 

Six months later at a local Chamber of Commerce meeting, I saw Mike’s son Jason. Jason came up to

me saying, “Ben, did you hear how dad died?”

 

“No,” I said. “I didn’t hear how your father died. Can you tell me?”

 

“Yes. Right before he died, he told all us kids that he wanted momma to come home and visit him. At

this point he hadn’t gotten up very often, he hadn’t gotten dressed to go out in weeks, and he hadn’t

shaved and done other personal grooming. But for this visit, he had his caregiver get him up, put on his

favorite yellow Izod polo, shave him and sit him in his favorite chair in the living room.

 

We brought momma home and sat her in the chair next to dad. My sisters and all of our kids were

there. Mom and dad were holding hands the whole time. Even though mom didn’t seem to know who

anyone was, she was very happy and chatted with an imaginary person in babble-speak non-stop. The

grandchildren talked to both of them: dad answered silly questions and the children giggled at mom’s

responses to their questions. My father had a big, but tired smile on his face. It was a happy moment.

After an hour and a half of this, dad turned his head using his headrest for support. He was very weak.

“Laura, my love, I am very tired,” he said. “I am going to go to sleep now.” And then daddy died

holding hands with his wife, in the presence of his children and grandchildren.”

 

This is a scene of a family facing terrible illnesses, which took two loved ones before their time. But

the family had as much closure and harmony as there could be in a situation like that. It’s the way the

end should and can be.

 

Many end-of-life diseases are incurable or won’t improve. However, if you know what to look out for

and how to find resources, you can get through the process in the best way possible. This is essential

since you don’t really have a choice about the situation you’re in. Use the elder care principles to

become more educated and prepared for the inevitable, so that your family can live on with their

dignity intact.

 

This e-book will teach you how to use these principles in your own life. They will help you survive

this journey.. Once you understand these principles, you will be better able to care for your loved one

while maintaining your own life and career with dignity.

 

Copyright © 2014 by Ben Neiburger. All rights reserved.