As part of a lifestyle and aging series, we’re working with renowned photographer Terry Lorant to showcase inspirational leaders in the industry. Each month, we’ll feature one or a few inspirational member(s) of the Amazing Care Network community who is using his or her voice to empower others in the collective aging experience. Read, in their own words, what the Amazing Care Network’s efforts mean to them.
This month, we’re proud to feature Diane, Electa and Laurie, all Members of Amazing Care Network. Diane, Electa, Laurie and Cora were classmates together at Mills College. Diane and Electa have been friends since childhood. We sat down with the three at breakfast one morning to talk about how their early friendships in many ways are descriptive of the founding principles of Amazing Care.
Electa and I have known each other since 3rd grade. Our mothers were friends and our grandmothers were friends. We didn’t really plan it out but we also went to all the same schools, including Mills College, where we met Cora. I have four brothers, so these are the sisters I never had.
We’ve known Cora since 1969. Even back then, she was always a very incisive person. She has the ability to look at a situation, grasp it, and figure out the steps needed to resolve any problem or issue. She’s doing that with Amazing Care Network. She’s looked at the issues that all of us will go through in the process of aging, and she’s figured out some of the steps we can take to do it together and in a good way. The Amazing Care Network has grown out of that. She knows the issues that all of us are facing and will go through in the process of aging and she’s figure out some steps to do it together and to it in a good way.
Cora had a couple of events here in Honolulu before Amazing Care actually launched. The teas are always interesting and dynamic; there are always ideas that you can incorporate. Then we also have quarterly meetings where we go on field trips. We’ve been on a field trip to the different senior residences. There’s one in Waikiki. AARP has a convention every year, so we went to that and then got together to talk about what we’d learned. That was good.
I managed caregiving for four elderly aunts for 10 years. At one point there were four of them, all in my grandmother’s house. They were all in their 90s with 24/7 caregiving. So I’ve had to deal with these issues with the generation ahead of us. A filmmaker friend, Wayne Wong was visiting once. He did the film The Joy Luck Club, and I said, “Wayne, this is Joy Luck Club, The Post Years!” My aunts wanted to stay at home and we wanted them to be happy. The younger aunts had started hiring caregivers for the older ones. And we retrofitted the home and just got together a really good group of caregivers.
I learned patience. And I learned how to listen…actually, to listen and listen and listen…there was a lot of repeating going on. That’s where the patience comes in. I’m the family historian, so their stories and memories were really quite precious to me. During this time I initiated an Elder Life series at the University of Hawaii at Manoa. We offered the community a workshop series on healthy aging, elder law, family caregiving, death and dying, etc.
Between the experience with my aunts and the Elder Life series, when my dad needed caregiving, I felt pretty well equipped to assist him. We hired some of the same caregivers who’d taken care of my aunts, found a geriatrician who did house calls, set up Dad’s Mac so he could do online banking, stock trading, and email correspondence, all from the comfort of his home office. He was pretty much the master of his domain and the king of his castle, to the end. It kind of rotated around his personality and what he wanted to do. He was a scholar and on the computer all the time, but he was also a real sports guy. So whenever the NBA or NHL finals were on, keeping up with his teams was important to him. Luckily we had caregivers who were into it too. There would always be a lot of screaming and cheering. I arrived at the house one afternoon to raucous cheering and heard a caregiver laughingly say to Dad, “Somebody owes me five dollahs!” Dad was chuckling, a good sport.
My parents passed away more than 20 years ago now. In the last few years of their lives, they needed care. I lived in an adjacent house. I have a brother, but he was not involved in a hands-on way. And my sister lives in California, so she’d come back as much as she could, but still, the distance made it hard for her. During that time, I had a brother in law who was a doctor, and that was helpful in some ways, but still, navigating the changes my mom was going through was really challenging. I remember at one point I’d see her in the morning, and then again at night, and at the different times, it was like encountering a completely different person. At night she’d sometimes be really upset and angry. She couldn’t remember, and her frustration was so palpable. She was having trouble swallowing, and they never really discovered what was wrong with her. In fact, they’d insist that nothing was really wrong. But I was seeing her every single day and something HAD changed. Finally, after she passed, a friend who was a nurse at Kaiser speculated that she’d perhaps been having mini strokes. But it’s really hard to detect. What frustrated me though was the neurologist who kept insisting that there was nothing wrong with her…she was “the same”. Dealing with that frustration was really difficult. I wish I’d had the Amazing Care Network during that period. When my mom was sick, I had to call every doctor I knew and try to make sense of what her treating physician was saying. Or not saying.
I remember when Laurie’s mom had to transition to a long term care facility for an interim period, you had a difficult time finding a place. You were calling around…it was hard for you.
At the moment that time comes up, you have to be ready. You have to look at all the available spots. We went to six homes to check them out. Sometimes it just comes down to where there is an available bed. Finally we found a place and were told that it could be held for her for two days. And you had to show that you had all your finances in order, to show that there was enough money to pay for her care for three years…that’s the average stay. And they said, come in with your financial information in a day! I remember running around like crazy. Finally my uncle said to me, “you live in Hawaii, she has a house. That’s enough.” The value of the house was more than enough to cover it for her. But in the moment, the pressure and the strain of trying to make it all work…you’re trying to figure out and manage SO many critical life details.
So, I think Amazing Care is helping us to prepare for when we are facing these issues ourselves.
Seeing the different places that are now providing senior living; that’s helpful…to hear what’s important at the different centers. Envisioning these changes now, and also thinking about it all when we’re young enough to clear out our house, and prepare for the transition. It takes a long time to get rid of all your stuff! Right now, we’re all talking about getting rid of our stuff.
Then of course, we have all these things that are our treasures, but nobody wants them. I hate to give it to Goodwill, and I hate to just leave it in my house, because I think about when I’m gone, and my family from the mainland comes to clear it out, they’re just going to have it carted away. I keep hoping that somebody’s experience at Amazing Care will help with this issue.
Q: Any thoughts/recommendations on self-care?
I just started yoga about 3 months ago. I do hot yoga every day. It’s been great. An emphasis on movement and exercise and that sort of awareness is more important at this point in life.
I was a pharmaceutical rep for many years, so I’ve been surrounded with health care people and I have my extensive network. A podiatrist, SR care pharmacist and a geriatrician are good friends. So, I know they are going to take care of me.
Longevity runs in my family. I have a grand uncle, my grandfather’s youngest brother who died last August at 105. The last 5 years he was in a home because his wife physically couldn’t manage his care anymore. Up until his late 90s he was raking the leaves, working around the house. Until 88 he was biking around the neighborhood. They had a really active lifestyle; it kept them going. The last 5 years he didn’t remember us. And, then his wife joined him in the home when she turned 99. He was very happy when she moved in. He didn’t know her name but he smiled a lot and was happy!
Amazing Care develops a network of resources that will allow us to tap in when the needs come up; at least we’ll know where to go, who to call. That’s the key, instead of leaving it all up to us having to research individually when the need arises and we’re not necessarily ready or in any way prepared. It cohesively brings us current information. That’s very helpful. I also like the fact that you can choose to start saving your money in a dedicated way with these issues in mind. It’s like a Christmas Club savings account…it’s there when you need it. And you have the option, if someone else has a need, you can share it…that’s a good thing!
In Hawaii we have such an active group. It taps into the heartbeat of our community.
All of the knowledge and being part of the network takes some of the stress off. It’s important to have an advocate to be with you, who has your best interests at heart and who can help you through these stages.
We’ve all been advocates for our parents, so they had us to help try to figure things out. But, we don’t have kids and even if we had kids, the next generation doesn’t necessarily live nearby, so, who’s going to be our advocates? That’s kind of scary. Who will be there for us?
We had a neighbor who was my parent’s friend. He passed away recently. But years ago, his wife had a stroke when she was 63 and it left her totally incapacitated. He was her caregiver. And we made food for them every week; my mother did. And then when my mother passed away, I did that. For 20 years. I’d see him once a week, and make sure he was ok and bring him food. He didn’t have kids, and he needed help. He had a guy come live with him. And I looked up and researched who this man was because I was kind of suspicious. And it turned out he’d been in prison for fraud. So I told our friend, “this guy doesn’t have a good track record”. He’s in your house and you have all these valuables. But I couldn’t get our friend to worry about him, because he took care of the wife, and he took care of our friend, and they needed that. He’d take our friend to buy antiques, and it was fishy. Then his wife died, and our friend died and his niece who inherited everything came and asked me what I knew because she knew I’d been trying to help him. And she said when they looked at his bank account…I knew how much he had; he had several hundred thousand dollars in the bank. And when he died, he had $11,000. So she thinks the guy managed to take all his money. But when I tried to help our friend, and went to the police and the FBI, and attorneys in government, they said they couldn’t do anything because he was still of his right mind and was making his own decisions, so it was up to him. I don’t know what he did to with the money. But…I hope that doesn’t happen to us.
It’s a balancing act you play when you’re caregiving, to give them the dignity and independence that they need, and support them…and be watching out for their interests as well.
In the last couple of years since I’ve retired, I’ve cleaned out for a lot of people. Sometimes there’s a lot of fabric and I’ve made memory quilts. I try to incorporate whatever they’ve done in their lives as part of the quilts. That way you honor the person, then sell the rest and get money for the nonprofit. Or give it to the family. Right now my garage is stacked with boxes of fabric for the next sale in November.
Years ago when I renovated my house I started thinking about and planning my future. I made sure I could live downstairs, I built in wheelchair accessibility, I got rid of carpets and just made it easy. And I’m unloading a LOT of crap now! Get rid of it! How much stuff do you really need?