Helping Dad Die

My brother, Mike, and I agree: It was a privilege to help our dad die. Taking care of Dad the last days of his long life changed our own lives and brought us even closer together.

Mike and I are one year apart and have always shared a special bond -- despite his living across the country in California for most of our adult lives. So I was relieved when he volunteered to come home immediately upon hearing that Dad had been admitted into hospice. Mike would provide a sorely needed strong back (my sisters and I were able to do less and less for our 200-pound father) -- and moral support.

I expected Mike to arrive, listen to my summary of Dad’s condition, roll up his sleeves and wait for my instructions. I was dreaming. Mike is strong willed, opinionated and righteous. Sort of like me. He had his own idea of what should be going on with Dad. And it wasn’t dying.

Mike arrived on a Sunday, six days before Dad died. That morning, as he helped Dad to his feet from the recliner, Mike grabbed the walker and coached him to march in place. “Dad, lift your legs, it will make you stronger. Then you’ll be able to walk better.”

“What are you doing!” I tried to push Mike away, and he instinctively did the same to me.

We both calmed down enough to get Dad to the bathroom and back. Then we went in the garage to “talk.”

“Don’t you get it? Dad is dying.” I said, probably too matter-of-factly.

"You’re encouraging him to give up,” Mike protested.

“Mike, you’re not helping.” I stormed out of the garage as Julie, Dad’s hospice nurse pulled up.

Julie had the glow and kindness of an angel, as did all of the nurses and volunteers we met from Seasons Hospice (866.752.0009) http://www.honoringlife-offeringhope.org/

Julie was also beautiful, and my dad didn’t hide his crush.

When she sat next to him and rubbed his arm, he asked her for a kiss. She didn’t hesitate. Then she took out her stethoscope and listened, reporting aloud that the “crackling” sound was progressing. She squeezed his wrist, his ankle, his abdomen and noted the imprint her fingers left. She took his blood pressure and indicated that it was lowering.

When she was done and put away her equipment, Dad asked her what he had asked me a few days earlier: “Am I dying?” I waited to see if she’d answer the way I did.

Julie smiled her kind smile and nodded. “Yes, Nat. You are.” I wiped my tears and sighed.

Mike stood in the kitchen, watching and listening. Good, I thought, he’ll take his cue from the professional and we can all be on the same page.

Dreaming again. Instead, Mike called Julie into the garage. “He doesn’t need to hear that!” Mike scolded. “You’re going to make him give up.”

Julie tried explaining that her long experience with hospice has taught her the best thing to do, when asked, is to be honest. It’s disrespectful, patronizing to lie about the inevitable -- when the dying ask. 

Experts agree: “You have to be honest. . . . You have to answer their questions, but don't volunteer information for which they have not asked, because that means that they are not ready for it yet,” said Dr. Elisabeth Kubler-Ross, author of On Death and Dying.

Two weeks earlier, Dad’s nurse from Aquarius Home Health Care (586.576.1955) called me at work to give instructions on how to care for his leg wound. (A month earlier, Dad had fallen, gashed his leg on his walker and was finally home after weeks of hospital and rehab stays. Still, the gash wasn’t healing and edema was moving up his body from his legs.) 

I asked the nurse to repeat the instructions, trying to write them down. She started, then stopped. “Your father is at the end of his life,” she said softly. 

“I know.”

That night, a Friday, when I arrived to spend the weekend as I had most weekends for the past six months to care for both parents, I talked to Dad about hospice.

“Will it rush things?” he asked.

“No, it may actually slow things down,” I said. “You’ll get more nursing care, and we’ll make sure you are comfortable and not in any more pain.”

“Ok, we’ll try it.” 

On Sunday, Dad signed himself into Seasons Hospice care. The nurse explained that the fluid was moving rapidly into his abdomen, that we would see an equally rapid decline and that he would need 24/7 care. Everyone around the table offered what they could do. Brother-in-law Mark volunteered to renovate Dad’s bathroom into a fully accessible walk-in shower.

The kind nurse shook her head. “You won’t get it done in time.” We pressed her for a timeframe. Two weeks.

Dad was 90 years old, the quintessensial Italian patriarch. Strict, demanding and often grouchy, he had his distractors. Even those of us who loved him unconditionally and could laugh about his grumpiness, had barged out of his house a time or two, often in tears and vowing never to return. We always did.

But no one could describe Dad better than himself: “A miserable son-of-a-bitch,” he’d say, waiting for someone to object. When no one did, he’d laugh. 

Of course, there was the other side. “When people think about me after I’m gone, I want them to say, ‘He could be nice.’”

Could be. That was the key. He certainly could be nice. And as I write this, that’s what I’m remembering. The times he was nice. The times he was fun to talk to and made my daughters laugh. The times he reminisced about his colorful youth proudly recounting his love of cars and crystal radio sets. 

Two weeks. It was hard to grasp the time was coming when Dad would no longer be on this earth. It’s not as though we weren’t ready. It’s not as though he wasn’t ready. For the past few years, when asked how he was, he’d answer in his gruffest tone: “Still here.” 

I called my five out-of-town siblings. They all wanted daily updates. Mike made plane reservations. 

For the next week, Mike and I were side-by-side, taking care of every detail that we were physically able to. Mike began to soften to the hospice nurses’ instructions but still hadn’t reached the fifth stage: acceptance.

Dad, however, had. He asked to have dinner with my brother Dennis, with whom he had strained relationship for too many years. He asked for a big, rare porterhouse steak from “the store,” Biondo’s Market (13786 E. 12 Mile Rd., Warren, MI 48088. 585.773.3060), the store he opened decades ago and today is owned and operated by my sister Barbara and her family.

He talked openly about his own death, asking several visitors if they thought he was dying. (Interestingly, he only asked those he knew were strong enough to tell him the truth.) 

One morning, Mike and I entered his room and found him sitting up in bed. “Mike,” he said rather cheerfully, “I didn’t die last night.”

The out-of-towners began to trickle in. Tom, my oldest brother, the dependable brother, the guy Dad leaned on throughout the years, arrived from Idaho on Thursday night, just in time to have a conversation. It may have been Dad’s last real conversation, because later that night, the rattly breathing began and he mostly slept from then on. 

Mike and I continued to work together, but still disagreed on some details: When to give Dad morphine, how much to give him. Whether we should suction the phlegm from his heavy, rattly breathing. 

But when Dad took his last breath on Saturday night with his entire family around him, Mike and I held hands. 

Weeks later, on the phone, Mike thanked me for allowing him the “privilege” of helping our dad die. 

“It was how he wanted it,” I said, not knowing what else to say. “He hit 90. He had all his kids and Mom with him. He was at home.”

-- Anne Marie Gattari, am.gattari@brightstarcare.com

Caring for the Future

Last week I listened to two sales pitches for buying now to avoid paying for the uncertainty of tomorrow. I went to hear about long-term care insurance and a wellness membership program as an objective reporter and businesswoman to gather information for this column as well as my upcoming home care agency, BrightStar of Grosse Pointe / Southeast Macomb.

I left doing the math – for myself.

If my husband and I bought today (we’re both 55), we would pay about $3,500 a year for a long-term care insurance policy from Northwestern Mutual. That would buy each of us $6,000 worth of monthly care when we can no longer perform two of six normal activities of daily living or ADLs.  

A wellness membership program, such as LifeChoices by Evangelical Homes of Michigan, delivers a range of services throughout your lifetime as your needs change. If my 60-year-old neighbor signs up now, she’d pay a one-time life membership fee between $35,000 and $50,000 and $400 a month. Because she’s healthy and fit, she’d get personal trainer services and nutrition advice today. As she grows older and her health and fitness level changes, so would the type and level of services she’d receive. If she ever needs 24/7 care, she’d get that too. (LifeChoices: 734.222.7222 or evangelicalhomes.org)

The theme that ran through both of these presentations was independence.  It’s the thing we take for granted until we get to the point where we’ve become “a pain in the ass” to our children, as my dad used to say. “We’re really getting to be a pain in the ass, aren’t we?” he asked one morning a few years ago as I was helping him shuffle into the doctor’s office when I was supposed to be at work.

No one at 55 or 60 thinks they’ll ever not be able to feed, bathe, dress, go to the toilet, get up out of a chair, or control their bowel and bladder – without help. Unless, that is, they’re helping someone in their family do these things, the so-called ADLs. And many people vow that they’ll take care of their parents, when the time comes. Until, that is, the time comes.

My friend Richard was adamant: “They took care of me when I was a baby,” he said. “I can take care of them.”

“Richard, you were this big (I spread by hands about 18 inches apart) when they changed your diapers,” I said. “Imagine doing that for a 175-pound adult. We all think we can do it. We think we should do it.”

The experts say otherwise: “Are you prepared to ask your grandchildren to give you a bath or take you to the bathroom. You have to ask, what’s the emotional impact if you haven’t made a plan,” says gerontologist and author Ken Dychtwald.

My parents made no such plan. They may have worried about being a burden, but their plan – when it came right down to it – was to rely on us girls. But it wasn’t that easy. Even for four well-intentioned, in-town adult daughters, the needs of my elderly parents have been overwhelming. To keep them in their home, which is what they wanted, coordinate the schedules, the services and the finances – and to try to get along when we disagreed – we needed professional caregivers to help us out.

And we had to find a way to pay for it.

Dad received almost $2,000 a month in Aid and Attendance VA benefits for the four months before he died. Mom gets $300 monthly as a surviving spouse. She also reverse-mortgaged her home. We spent many hours and days finding the right experts to help us: Rick Lemanski at Simasko, Simasko and Simasko in Mount Clemens, 586.468.6793 or www.simaskolaw.com; Bert Bojesen at Senior Equity Income in Okemos, 877-626-2621 or seniorequityincome.com.

I tell myself that I’ll avoid this scenario by staying healthy and continuing my exercise. (Did I mention that Dad quit smoking in the early ‘70s and was religious about going to the spa right up until his final six months?)

So I do the math: $3,500 a year now for $6,000 a month of care later; $35,000 membership fee now for unlimited care, services, support later. Like so many other 55-year-olds, I wonder, what to do.

“We basically have five options when it comes to funding our future: Medicaid, Medicare, and that’s a big maybe. We can self-fund, we can buy long-term care insurance, or we can draw straws to see who’s going to take care of us,” says Chris Flynn, long-term care expert and Northwestern Mutual agent. (313-824-4264, www.nmfn.com/chrisjflynn)

Soon, I’ll have to stop wondering and take action.

Anne Marie Gattari, am.gattari@brightstarcare.com, a former Detroit journalist and Ford Motor Company public relations manager, will open BrightStar of Grosse Pointe / Southeast Macomb in August.

For the True Angels, It's a Calling

"I'm tolerating her,” Mom said when I asked how things were going with her live-in caregiver. My heart sank. I wanted things to work out with this woman we placed in Mom's home to take care of her. I needed it to.

After Dad died a year ago, my siblings and I regrouped. There was no disagreement among the 10 of us that Mom, 88, needed care. She had beginning stages of dementia, diabetes, congestive heart failure, and now the tremendous grief of losing her husband of 66 years.

But we couldn’t agree on how much care Mom should have. So for the time being, we went back to "the schedule," which meant the four in-town sisters would take one day a week each (our day off from our fulltime jobs) and use the two hired independent caregivers for the other three days. The plan was to be with Mom from 8 a.m. to 8 p.m.

We’d arrive in the morning, give her breakfast and morning meds including insulin; get her showered and dressed. Sometimes we’d be able to realize the plans we had made and take her out. Other times, she’d be too tired or just didn’t want to go out. She’d sit in her recliner, tethered to her oxygen tank, and watch TV or nap.

In the evening, after dinner, we’d perform the leave-Mom-for-the-night regimen. We'd get her ready for bed, leave a night snack on the counter, prepare coffee for the morning with a sticky note that read: "coffee ready, push button to start." We'd leave a second note reminding her what day tomorrow would be and who was coming. We'd make sure the knobs were off the stove and the night lights were on in the kitchen. Then we'd kiss her good night, encourage her to use her walker and leave, locking the door behind us.

We didn’t talk about what happened next, but we each did it. Before pulling out of her driveway, we sat in our car and cried. Sometimes just a little. Sometimes a lot. We admitted it to each other months later.

And in the morning, before opening the door, we’d take a deep breath and say a little prayer. We never knew what we’d find. One morning it was this: a fry pan on the stove, nothing in it, the smell of gas in the kitchen. Because the knob was gone, she used a towel to grip the little metal piece and turned it enough to release gas but not make a flame.

Another morning it was this: she was in the bathroom, trying to take off soiled pants and socks. She was struggling to keep her balance on the wet tile floor.

Meanwhile, the miracle we had been waiting for happened. The reverse mortgage we had been working on with Senior Equity Income of Okemos, was approved. Before long, Mom’s newly established trust fund account held enough money to pay for 14 months of 24/7 care.

The family strife that followed is almost too painful to recall, but I must. I know what happened between my sisters and me is all too common in families struggling with similar life-changing decisions. We were divided. Two of us wanted to hire full-time care. We openly admitted it wasn’t just for Mom; it was for us, too. Rita and I could no longer do it. We needed a break and said so. We also felt strongly that Mom needed professional care. This, according to the other two sisters – and two out-of-town siblings they lobbied – meant Rita and I were selfish and didn’t care about robbing Mom of her independence. They also worried the money would run out.

After endless telephone conversations (many that did not end peacefully) and text messages with siblings across the country and around the corner, Rita and I convinced the majority. One sister held out, didn’t speak to us for months and no longer socializes with us. She’s been heard to say her life is much less stressful without us in it.

We found an “affordable’ home care agency and set an appointment at Mom’s. I didn’t like the fact that the representative, I’ll call her Mary, hardly spoke to Mom. Nor did I like the fact that she didn’t ask to see the house. But I did like the price. So we signed, and I convinced myself it would be fine. Rita agreed.

When I first met Carol, the caregiver who would stay with Mom, I didn’t like the fact that she barely talked to Mom and didn’t look any of us in the eye. But, again, I liked the price and convinced myself it would be fine.

It was ok, but never fine. Carol and Mary women took adequate care of Mom. She was always clean and never hungry. But she watched too much television and seemed more depressed than ever.

I asked Mary about activities, senior day care, anything. She said she had heard of a place, but couldn’t remember the full name. I found it searching the internet: “A Neighbor’s Place” run by Catholic Services of Macomb, was less than a mile from Mom’s home. I enrolled Mom and arranged for Carol and Mary to take her two days a week. I thought it odd that Mary didn’t have a list of such places at the ready, and even odder that I had to ask in the first place.

A few times when I dropped in for a visit or went to pick Mom up, I didn’t like the way Carol spoke about Mom in front of her – retelling something Mom did wrong as if she were a child who had to be reprimanded. When asked, Mom said Carol was “cross” with her. “But don’t say anything,” she pleaded. “I am tolerating her.”

When Paul, representative of the new agency we were considering, came to Mom’s house, I hung back, waiting to see how ­– if – he engaged Mom. I waited for him to tell us what kind of day we could expect Mom to have with his staff. Then I asked him about the women he employed to live with elderly people. He didn’t hesitate: “They see this as a calling, not a job,” he said.

Angels, I thought, like the nurses and volunteers of Seasons Hospice of Madison Heights who tended to Dad during his last days.

The next day Vivian came to meet Mom. As I sat with Paul in the kitchen signing papers, Vivian talked with Mom in the living room. I strained to listen, and this is what I heard: “They told me you’re a wonderful baker, that you make the best apple pies and banana cakes from scratch. I can’t wait to learn your secrets.” They both laughed.

Michigan has no licensure requirement for private duty in-home care. Caregivers are not required to have formal training. But the good ones do. They invest the time and cost to become Certified Nursing Assistants, Home Health Aides and Medical Assistants. Agencies aren’t required to do background checks on caregivers. But the good ones do. They do drug screening and a 50-state criminal record check.

Look for home care agencies that employ Certified Senior Advisors and are accredited by The Joint Commission, a national health care watchdog organization that audits hospitals and clinics to ensure the highest standards. BrightStar is one of the few that requires its franchised agencies to become accredited within a year of opening its doors.

Here’s the lesson: Don’t ever settle for care that you’re not absolutely over-the-top happy with. Ask tough questions in the first conversation. How do you screen your caregivers? Do you conduct background checks – in all 50 states? How long have your caregivers been with you? Who are the women – and men – who do this work? Why do they do it? Tell me about the person you think would be a good match for my mother.

Then wait and listen. What does the person on the other end of the line or across the table ask you about your loved one? Do they ask the right questions – ones that give them a real picture of who your mother is? Do get the feeling this person is really trying to understand your predicament or just pitching a service.

Does a nurse or other qualified medical person come to assess your mother or father and inspect the safety of the home? Do they suggest a customized daily activity plan? Do they promise to return often to check on things? What other aspects of care do they offer to make your life easier – to give you full and complete peace of mind?

Make notes and follow up. If the activity plan – or plan of care – is not being followed to your complete satisfaction, call the agency. If your loved one is merely “tolerating” her or his caregiver but not delighted, ask for a new one. If they don’t respond immediately, find another agency.
Reach out to the expert support services in your area for guidance.

The Area Agency on Aging 1-B (800.852.7795 or www.aaa1b.com) calls itself “your link to community resources” and for good reason. The seasoned call center operators can help you assess your situation and connect you with the appropriate agencies and services. They’ll also help you determine if you qualify for government assistance programs.

Services for Older Citizens in Grosse Pointe is dedicated to helping seniors “maintain their lives in independence and dignity.” The staff is compassionate, knowledgeable and always has time. The programs are creative: chair fitness classes; movies and pizza; armchair traveling. (313.882.9600 or www.socservices.org)

A Neighbor’s House in Clinton Township (586.412.8494) and Warren (586.759.8700) welcomes seniors for half or full day of activities. Their skilled team offers dementia care among many other valuable services. Transportation and lunch are also provided.

Rick Lemanski at Simasko, Simasko and Simasko of Mount Clemens (586.468.6793 or www.simaskolaw.com) can help you determine your father’s VA benefits eligibility or your mother’s surviving spouse benefits. The legal staff there can help with estate planning and other elder law issues.

Use these and other community resources. Remember, you’re not in this alone. And you shouldn’t tolerate anyone in this field who doesn’t view their work as a calling.

Only angels should ever get through your mother’s front door.