Washingtonians for a Responsible Future

My name is Eileen McKenzie-Sullivan, and I am 61 years old. I live in Tenino, in the 20th district and my state legislators are Senator Braun and Representatives Debolt and Orcutt. For the past five years, I have been taking care of my 93 year old mother, who has congestive heart failure, in my home. On a good day, Mom can do a little more for herself, but I primarily help out with light housekeeping, laundry, cooking, and helping her get her compression stockings on and off.

There is no question about me and my family taking care of my mother – there really is no other way. Before my father died, my parents had a bit of retirement savings put aside. But then my father had open heart surgery and most of their retirement savings went to the medical bills for that, so my mother has very little left for herself now. She needs help, but she doesn’t have the funds to employ people to come into our home to do it, and she doesn’t want to trouble our neighbors and friends, so she mostly goes without.

Being home alone is Mom’s only option. She’s lonely. She can’t go out a lot because her diuretic medications means she needs to be close to the bathroom. She could do a daytime senior center, but most of them close around 3pm, and what would happen until I get home from work after 5?

Having people come to the house would be the best option, but we can’t afford that. Ideally, we would have someone come to the house for 2-4 hours a day, 3-5 days a week, to check on her and help her out with housekeeping, laundry, just the things that keep people comfortable in their homes. I’d love to have someone help her with cooking. Right now, we rely on microwavable meals for her, but they are all very high in salt, which is terrible for someone with congestive heart failure.

She is by herself at home all day while my husband and I are at work, and that worries me a lot. She has had a few falls while I’m at work. She has a MedicAlert but won’t push it because it’s embarrassing to have the fire department show up at the house, so she lies on the floor and waits for me to get home. I can’t lift her by myself, though, so I still need to get help to get her up.

The financial impact of caregiving is tough. I often need to take time off of work to take her to doctor’s appointments, and I am lucky that I have the flexibility to take time when I need to. My supervisors understand my situation, but tolerance goes down when it goes on for years. Her doctors are about 20 miles away, so the cost of gas adds up.

Sometimes I think I should retire early, but if I retire between 62-66, it means I will only receive 74.2% of the Social Security benefits per month. If I retire after 66 and 3 months I would get 94%. And of course, both of these are still less than I would receive if I retired at the official age of 67 and a half, when I would receive full Social Security benefits.

My mom served her country as a World War II Navy nurse. Later she worked as a psych nurse – these were very difficult jobs, but she worked hard her whole life. Why don’t we take better care of the people who have contributed so much over their lifetimes?

My mother has Medicare, but no Medicaid coverage. For the most part, Medicare doesn’t cover in-home care like what would help us the most. There needs to be change because retirement communities and assisted living community are too expensive. They may have given mom more socializing outlets but would take all her disposable income from her.

Our seniors deserve to be able to age with dignity and obtain affordable care at home, and it should not be so hard on the families that help make that happen. Thank you for allowing me to share my story.

-Eileen McKenzie-Sullivan, Tenino

My name is Ava Frisinger and I’m here in support of The Long-Term Care Trust Act. I live in 5th district in the Issaquah area where I served as the mayor for 16 years. I now serve on my local Seattle-King County ADS Advisory Council for the Area Agency on Aging and the state council on aging. My family has dealt with the issue of caregiving and I want to speak to that experience today.

Our first experience with family caregiving occurred when my mother-in-law was widowed and diagnosed with Alzheimer’s. My husband and his siblings all lived at a distance and were in jobs that they simply could not leave. My 23 year old daughter Diane volunteered to leave her supervisory job in Washington and move to Florida to be with her grandma during her final year of life. Being dropped into a new place and responsible for 24 supervision of her grandma was isolating and emotionally straining for Diane. She loved her Grandma but the whole situation was extremely hard for her. My family was able to afford to pay Diane’s and grandma’s living expenses and some home care to help give Diane a break, and she felt that was invaluable for her health and wellbeing. Thankfully, after a year of unpaid caregiving Diane was able to return to Washington and get her job, but that was no guarantee.

After going through this experience, my husband and I chose to purchase long-term care insurance. We have had our plan for 17 years during which the premiums have become unaffordable. This past year, the premium was set to triple, so we decided to lock ourselves into a doubled premium level of $230 per month offers us fewer benefits than our original policy and the premium will continue to rise. The policy is worth $25,000.

Our biggest concern is that even with this policy in place, our family would still need to help out, and that would be incredibly hard for our children, placing them firmly in the sandwich generation. Our kids would not be able to continue working in their current jobs if they had caregiving responsibilities in addition to raising their children. And that’s not something I want for my kids or grandkids.

House Bill 1636 offers real choices for families dealing with long-term care issues. If this program had been around while I was working, if and when my husband or I need care, my children wouldn’t have to choose between paid employment and providing quality care for their parents. My grandchildren would have parents who could devote more time to their lives, and have fewer worries about their parents’ health.

I thank the committee for hearing this bill and thank co-sponsors, Rep. Jinkins and Rep. Johnson for their hard work on this important issue. And I ask that you all support HB 1636.”

-Ava Frisinger, Issaquah

I am the primary caregiver for our daughter, who is on the autism spectrum, and also cared for my mother when she was alive. I left the workforce when it became clear our daughter’s needs were greater than anticipated, and her doctor recommended she not be in a daycare setting. I was an administrative assistant at a regional HIV/AIDS service organization that served most of Western Washington. We provided advocacy to clients, helping them obtain and maintain housing, and provided education to other providers. After leaving my job, I was the natural choice to provide transportation for my mother when she had to stop driving due to poor vision. Shortly after that time, she was diagnosed with lung cancer and needed more frequent transportation and help. Then her dementia progressed, and she also became diabetic, then required 24 hour oxygen due to COPD and her cancer.

When my mother was in her own home, there was usually at least one daily ‘check-in’ call. She would frequently call me with an “emergency,” which could be as simple as not remembering how to turn on her television or as complicated as her oxygen tank failing that required immediate attention. I was always aware that I may need to drop everything and get over there. When my mom needed more care than we could provide we finally convinced her to get some help from an agency at the rate of about $20 per hour, for approximately 12 hours per week. My mother’s care was provided at home, until the last several weeks when she was hospitalized and subsequently discharged to an adult family home for hospice care. Even though family members initially wanted to bring Mom home for her last weeks, we couldn’t arrange enough hourly care – even through the coordination of multiple agencies – as she needed 24 hour care at this point in time for the discharge. Her last few weeks were spent in an adult family home that we were extremely lucky to find. Fortunately, while her day-to-day care was not covered by Medicare, her hospice care was.

Due to the nature of caring for a child with autism and a mother with multiple medical issues including blindness, diabetes, COPD with lung cancer in remission, and dementia – on top of regular day-to-day family needs – there was really no such thing as a “typical day.” Even without being a caregiver, interacting with a parent who suffers from dementia is emotionally wrenching.

While my mom was alive, I had to schedule carefully around her medical and transportation needs. I missed some of my kids’ school activities due to my mother’s care needs. When we had opportunities to spend time together as a family, I often opted to stay home by myself while my husband and kids went off, just so I could have some peace and quiet in my own home. Alone time often included using the time uninterrupted to catch up on bills and paperwork but I missed out on family time, and that was a hard position to be in.

Obviously, vacations are few and far between. We’ve had only four in the last 17 years. I’m tired, both emotionally and physically. If you consider caregiving in relation to a job outside the home, it’s one that I don’t go home from, or take a vacation from. While my mother was alive I was on-call 24/7, just as I am in the case of our daughter.

Now that our daughter is able to be more independent and I have some time to work outside the home, I can’t seem to find a job that works, I’m not contributing in the way I want, or being mentally fulfilled. I’ve had to quit jobs, or take temporary positions. My resume has suffered, and now, most potential employers don’t respond.

I wish there were resources to help caregivers to balance work and caregiving and return to the workforce in spite of the gaps in work history. Because chances are, we’ve developed some valuable skills!”

–Ferol Max, Rochester

For Darryl Johnson, caregiving came naturally, even when he was a child.

Johnson says people become caregivers because “it’s something that we have within ourselves. That person needs us. That’s why we do it. That’s who we are.” Darryl has been a caregiver most of his life and it all started when his grandpa came to live with his family as a kid. When his grandpa needed to go to the bathroom or wanted to go out for a walk he knew that he could always count on Darryl. For Darryl, being a caregiver is the best thing in the world. During this time Darryl built a foundation for understanding how to be a caregiver. He began figuring out the common sense of being a caregiver, “to do this you have to know what the person is going through and because everyone is different you can’t go by the book.”

Darryl has been a caregiver for his mother-in-law the past ten years. To care for his mother-in-law he wakes her in the morning and makes sure she has a chance to go to the bathroom and eat breakfast before he takes her to dialysis. While he waits with her he knows he is appreciated as she thanks him for taking the time to sit with her. As the caregiver for his mother-in-law he wears many hats. He is in charge of all the scheduling for her appointments and day, he ensures that all of her insurance is covered, and he physically assists her with day-to-day tasks. It is a special skill set and a lot to organize. Darryl calls himself just “a plain old American guy” who is “trying to take care of [his] family.”

Darryl was a janitor and had been recently promoted to a supervisor when his mother-in-law got sick. “It was hard–there was a sense of loss for my personal self,” he recalls, but by being a caregiver he became a better man. Finances became challenging for his family though. When the market crashed they lost their home and for two years stayed with family and friends and lacked necessary housing to care for his mother-in-law. They knew that she wanted to be home with them though so they do the best they can for her. “You have to make triple the rent price, nobody is making that, no one can make that,” he says. Through all this though he worked to keep his mother-in-law with the family, vowing, “she always has a place with us.”

Through all these challenges Darryl wishes that there was a way to have the public understand what caregivers do so that people would be more understanding and receptive that the job is much more than people understand. “Being a caregiver means giving a part of yourself and thinking about how you would want to be treated when you are in that position.”

-Darryl Johnson, Auburn

For Theresa Greenwood-Johnson, caregiving runs through her blood. Her grandmother was a caregiver, as is Theresa, and her daughter is also continuing the tradition. For Theresa, being a home care provider is about the sense of herself that she gets from being able to help people everyday and know that she is making a difference. Although she could make more money doing office work, her heart is in caregiving. Her gift is being able to make anyone she interacts with feel safe and comfortable even in situations many would find embarrassing, such as bathing. This is a skill that she holds near and dear to her heart as she knows that sometimes something as simple as a shower can be a gift that allows people the chance at a fresh start.

She took her caregiving superhero powers on the road in 2014 when she went to care for her dad in New Mexico, using up her life savings in the process. He had Social Security and savings, but it wasn’t enough to cover the cost of long-term care. At the time she had been living and working in California for 40 years, but when her father’s hospital trip turned into an extended stay she packed her bags to help him with meals, wound care, bathing, grooming, and cleanup as he recovered from a blood infection and a broken femur. Being her father’s caregiver was very difficult emotionally, physically and even more financially.

As her father began to heal and gain independence, and her funds were running dry she moved to Washington to be closer to her aunt and uncle. When she first moved her she drove 800 miles a week for a year to caregiving jobs, but now she is starting to find more work stability. She is also celebrating her 7 month anniversary with her new husband, and keeping in contact with her children who live all along the West Coast. However, she is unable to have a long-term care plan for herself, simply because she can’t afford to do so on a caregiver’s salary. The savings she was able to do during her 40 years in California was depleted while caring for her father, and while she continues to work hard there is little more she can do. While she worked so hard to provide for her children and ensure her father is cared for there is simply no way. Her father’s care needs are also growing and she knows that he needs more than he’s getting. She wants her legislature to know, “we need help.”

When faced with difficult decisions Carrie Lange puts her parents’ wellbeing on the top of her list of priorities. Carrie had been asking her parents to move to Washington from Indiana so that she could support their care and wellbeing. She had always been denied based on her parents’ refusal to accept help. However, when her mom’s health took a turn for the worse after spending nineteen days in a nursing home they knew something had to change. Today, Carrie shares her home with her husband, two teens, five dogs, and her mom. In Washington her mom is able to go to a subsidized adult day program at Full Life in Renton. The City of Seattle also provides the bus service to pick her up and drop her off. This program is very important to the Lange family, Carrie says, “It’s a wonderful program that we would never be able to afford without the help. She goes 5 days a week for 4-5 hours a day. I honestly don’t know what I would do without that program!” It also means a lot to Carrie’s mom because her favorite thing to do is get on the bus to the adult day care center. “She can look out the huge windows, listen to the music. She really likes her bus trip.” It also provides a positive experience for her mom, “When she starts to get bored, we talk about how she’ll be catching the bus tomorrow to go to the senior center. Then she always calms down for a while and relaxes, because she has something to look forward to.”

Carrie takes care of her mom’s day to day needs; although the work isn’t easy she loves her mom. The first seven months her mom moved in Carrie tried to continue to work at her job as well as being her mom’s caregiver. She found that with the workload “everything, including my job, was suffering.” The toll on Carrie was especially difficult, and she remembers the time saying, “It felt like I had been dropped in hell. It was just too much.” In order to provide the best care for her mom she had to leave her job where she was making three to four thousand dollars per month. Today the family is facing a new hardship as Carrie’s husband will be laid off from Boeing April 22nd. Although he has some positive leads the family worries that his age will inhibit him from finding a job. Carrie’s mom does have social security and a small pension but most of the money goes to her direct care. Carrie and her family are faced with hard times, but they remain hopeful as her husband’s job search continues.

–Carrie Lange, Kent

Ann

Ann’s mother dancing with a family friend

“My name is Ann and I took care of my mother who had a slow declining dementia for 15 years. I was able to work and maintain for many years with help from a day program. The rest of her care, bathing, cooking, and all the day to day needs were up to me. I was raising two daughters at the same time. Eventually, I had to move into my mother’s home with my family. Eventually I was able to receive some pay from the state’s aging services, which helped our family. The pay was not comparable to all of the hours I worked, but it kept mom at home. I did have to quit my job to care for my mother until she passed away. I felt lucky that she got to be with her family for her last days. I am not sure what we would have done otherwise.“

-Ann Bredice, Seattle