Wisdom of a Caregiver: Never a Burden

Susan and Emi Shinagawa, circa 2004. (Photo: Courtesy Susan Shinagawa)

Susan Shinagawa reflects on her experiences caring for her mother, Emi, during her final months.

By George Toshio Johnston, Senior Editor, Digital & Social Media

If anyone can speak to the real-world experiences of being a caregiver for one’s elderly parents, Susan Shinagawa of Spring Valley, Calif., certainly has the bona fides.

Not only did she help care for her own parents — John and Emiko Shinagawa of Milpitas, Calif. — she also helped her sister-in-law, Cathy Deatrick, care for her and her brother’s parents, Bob and Shirley Norberg. (Bob died of metastatic prostate cancer in 2013; Shirley, who lives in Boise, Idaho, with Cathy, has Alzheimer’s disease.)

Emi and John Shinagawa had four children: Susan, the second-oldest and only daughter, and three sons, Arthur, Jimmy and Robert. Emi, who died Feb. 25 at 88, hung on to life much longer than anyone might have guessed. Not only was she diabetic, she had suffered eight known heart attacks, and when she went into hospice care (which typically is for a six-month period, tops), it had to be renewed twice.

“You wouldn’t know it by looking at her and talking to her, but she was probably one of the strongest women I’ve ever known,” Susan said of her mother.

Caring for her mom over the last months of her life was a challenge for Susan on many levels: geographic (Susan and her husband, Rob Norberg, live in near San Diego, but San Jose-adjacent Milpitas is an eight-and-a-half hour drive away), physical (Susan is herself on permanent disability as a two-time cancer survivor who has to watch her own health — but was still able to help her mother without having to worry about career obligations) and emotional (“It would kill me if she died when I wasn’t there,” Susan said.)

Nevertheless, Susan was a willing participant when it came to caring for her elders. “I wanted to take care of my mom. Because both of my parents had taken care of their parents, from a very, very early age, I just always knew that when my parents needed me, I would take care of them. It was never a question for me,” said Susan, 60.

According to Susan, her mother, Emiko Shinagawa, lived alone and was very independent — but then she had a heart attack on June 29, 2015. It wasn’t, however, her first heart attack, as doctors determined that she had at least one other prior heart attack than had gone unreported, and her arteries were 99 percent occluded.

The Pacific Citizen interviewed Susan Shinagawa about her recent experiences as a caregiver for an elderly parent. While she allowed that her somewhat unique situation allowed her to have the time to care for her mother, she still had knowledge and wisdom she wanted to pass along to anyone anticipating having to care for an elderly parent, with some of her advice falling under the heading of “Do As I Say, Not as I Do.”

Pacific Citizen: For somebody who may be anticipating having to be a caregiver for an elderly parent, whether it’s installing in handrails or a ramp in the home or getting legal paperwork like a power of attorney, what come’s to mind as far as advice for someone transitioning into becoming a caregiver?

Susan Shinagawa: It all depends on the person being cared for. My mom was 85 when she had her first recorded heart attack and had diabetes for over 30 years at that point. She had been diagnosed with angina in 2008 and took nitroglycerin tablets if she had chest pains.

But for some reason, she wasn’t seeing a cardiologist, which I find really strange. Like I said, she was very independent. She was one of those Nisei who, if something was wrong with her, you wouldn’t find out about it until months later. But she considered herself to be relatively genki, which she was for her age.

It wasn’t until she had her heart attack and it was clear that I was going be staying with her for awhile that she decided it was a good idea that I have power of attorney, and she showed me where all the stuff [important documents] was.

We actually put in a ramp for my older brother [Editor’s Note: He returned from the Philippines to help care for Emiko but mysteriously had developed endocarditis, a heart infection, as well as kidney failure, and was hospitalized for 10 weeks.] and ended up needing it, which was good because my mom eventually needed it also. I don’t know if she would have wanted it done herself. We had already installed grab bars in her shower and bathroom. We removed runners in her hallway on the hardwood floors so she wouldn’t trip on them.

I think it’s really important for the person who’s being cared for to feel like they have as much control as possible. … When you lose control of everything else in your life, you feel like you have to hang on to something. I knew that having control of her life was going to be important for her. So, that’s why I say it really depends on the person.

P.C.: Regarding the power of attorney and other documents, you almost have to make an appointment while people — the caregiver and the recipient of the care — are still healthy.

Shinagawa: I think it’s important to have that conversation before somebody gets sick, something as simple as, “What do you want to have happen if you have a heart attack, and you can’t make a decision for yourself?” She had let me know her desires about that [extraordinary lifesaving measures] decades ago.

P.C.: Does it have to be in writing?

Shinagawa: It’s good if you have it in writing. I have three siblings, and if it wasn’t in writing and one of them objected to that, then I couldn’t say, “That’s what mom wanted.”

Once you’re hospitalized and especially the older you are, they ask you for a living will or whatever, and they want you to fill out that information. The hospital — at least that’s how it was for Kaiser — encourages you to do that. I would encourage people to think about these things long before they’re ever needed.

P.C.: Did your mother have any cognitive impairment issues?

Shinagawa: With my mom, I wouldn’t say she lost any of her cognitive ability, but while she was in the hospital and in pain and feeling horrible, that’s not the time you want people making decisions.

In my mom’s case, she was lucid up until two days before she passed away. A week before she died, she said to me, “Why can’t they just put me to sleep?” and I said, “You mean like take a nap to sleep or like what they do with dogs?” and she said, “Like what they do with dogs.” I knew she was pretty tired of what was going on.

Amazingly, her heart was so weak, and by law, they can only put you in hospice when they think you have less than six months to live. After that six months, you have to be recertified every two months. She was recertified twice, so she lived longer than they thought she would, as bad as her heart was. I couldn’t believe she was not only alive, but also able to think and talk. She was done with it — she wanted it to be over.

P.C.: Did you ever have a discussion or consideration for a Dr. Kevorkian-style assisted suicide situation?

Shinagawa: We didn’t. California does have that [law], however, you can’t find a doctor who will carry that out right now, even though it’s legal.

It’s interesting — my dad, he never said, “Why can’t they put me to sleep?” He’d been sort of sick for a while, and for the last year of his life, he was in the hospital more than he was out of the hospital. He was in a lot of pain; he had a lot of complications. He would actually come out and say, “I’m done with this, I don’t want to do this anymore, why can’t I just hurry up and die?”

Maybe it’s a male thing. Even though my father was Japanese and my father-in-law was Caucasian, at the point they started being unable to do things they were always able to do, it was really frustrating for them.

P.C.: Somebody who ends up being in the shoes of being a caregiver, what about your own mental and physical needs? Do you feel guilty about taking a break, even if it’s for a day?

Shinagawa: It’s interesting. Until my mom passed away, it never bothered me that I was taking care of her all of the time. I have three brothers — the one who came back from the Philippines lived with her, and the other two live within five minutes — and it didn’t occur to me until she passed away that not once did any of them say to me, “Hey, Susan, would you like the afternoon off? Would you like to take the weekend off and see your husband?” Not one of them ever said, “Would you like me to go grocery shopping for you?”

It wasn’t until my mom died did I think about that. For people that are not the caregiver but close to the caregiver, they need to offer that. It is important for people who are caregivers for an extended period of time that they get a break.

P.C.: Is it incumbent on the caregiver, if no one is offering, to ask for help? How much of it should be on the caregiver to not worry about imposing on someone and say, “I need your help!”

Shinagawa: I think if I had been one of my brothers, it would have been more natural for me to do that. I think that for someone my age who is female, and I consider myself to be a very independent woman, I’m still in the mode of, I don’t ask for help.

P.C.: So, would it be safe to say that one of the tips you might have is don’t feel guilty asking for help, even if you’re one of those people who never asks for help?

Shinagawa: This is where that “Do as I Say, Not as I Do” thing comes in. In fact, even if you don’t think you need a break, it’s important that people give you a break. Part of it was I’m the only daughter, and mom and I were always closer, and because of my medical history, I know how to take care of people better.

Because of my disability, I have to go home every 11-12 weeks for a medical appointment [Editor’s Note: Shinagawa has a surgically implanted continuous infusion intrathecal drug pump that must be refilled], and I’d usually fly home, have my appointments and fly back. My three brothers would share the time, and I’d have to make up a schedule and write up all the instructions. They’d only do it every three months, so they wouldn’t remember, and things would also change.

[Editor’s Note: Shinagawa related how before one of her trips back to Spring Valley, her mother wanted to accompany her by car, even though she was getting weaker, which made things more difficult, and her mother became very ill on top of that, and they ended up returning to Milpitas earlier than planned.]

It wasn’t until after we got back that she told me that she was afraid to not be with me because I knew how to take care of her. It’s not that she didn’t want to be with my brothers, but she felt like I was able to give her better care.

P.C.: Having had these experiences, caring for your parents and your husband’s parents, has it caused you to rethink your own future? What sorts of things will you be doing as a result of your experiences?

Shinagawa: I have thought about it a lot, and part of it is because my husband is hakujin and his family view on taking care of people is different than my experience was. The things that I’ve thought about, because I don’t have any children of my own — there’s not going to be anyone to take care of me when I need them. So, I know that I’ll need to go into some kind of assisted living, but I don’t have the finances to pay for that. I’ve thought about it. I don’t know what to do about it.

P.C.: Thank you for taking the time to talk about this. Did you have any parting thoughts?

Shinagawa: For me, it has been more of a gift for me than something that I had to do. It allowed me the time to spend with people in a more intimate way than I would have never otherwise been able to. Everything that needed to be said was said long before anybody passed away. To me, it was just so much more of a gift to be able to spend the time and be able to help. I’m not saying that people who don’t feel that way should feel bad about that. I think that’s just me, and a lot of it has to do with because I always thought that I would take care of my parents. It was never to me a burden that I thought I had to do. I wanted to do it.