Personal Experiences2017-09-27 16:18:05
My name is Adriana and I am a Sandwich Generation Family Caregiver providing support for both my parents and children. I was pregnant with my first child when my mother became ill with five autoimmune diseases. At the time my parents were providing care for my grandmother who had dementia and lived with them. I quit my job and my family moved from Seattle to Olympia to help her. The decision was extremely difficult. My husband and I had amazing careers and owned our own home in Seattle. People thought we were crazy to “walk away” from the life we had built, but I felt there was no other choice. After my son was born I was diagnosed with cancer. We could no longer meet my grandma’s needs, so we sought out a home where she would get the care she needed. I toured every assisted living and skilled nursing facility in Thurston County with my 2-year-old son with special needs in tow. I found a wonderful adult family home and she lived there 6 years, until she passed away at the age of 92.
My passion for caring continued to grow as I adopted 2 children, both with special needs while providing in-home care for my parents. I provided in-home care for both my mother and father for 14 years until they passed away. While my Grandmother was living with my parents I did all aspects of personal care, including bathing, dressing, feeding, and toileting. The type of tasks I did for my parents were things such as making appointments, taking them on errands, driving them to medical appointments, cleaning and cooking. My father was able to live at home until the end of his life, with the help of paid caregivers. If I had not been available to care for them for all those years, it would have cost them on average $100,000 per year.
In total I was an unpaid family caregiver for my grandma and parents for a little over 14 years. There were times when I had to rely on my 11-year-old autistic son to care for my infant daughter for about 6 hours at a time so I could take my dad to treatments. I simply had no money for a sitter or respite care. My husband and I barely saw each other during this time. As soon as he got home from work, I had to go to the hospital or to my parent’s home to care for them. My health deteriorated because of the stress, I didn’t get very much sleep, and had no time for self-care.
While it was important for me to provide this care for my family, the financial impact can still be felt. To be a family caregiver I took 14 years off from work. I left a lucrative career as a marketing and business development professional. If I figure out my lost wages, a very conservative number would be $840,000. This has impacted my ability to save for retirement, save for my kid’s college, and pay for my own healthcare expenses associated with being a cancer survivor. When I think of my time as a family caregiver, I feel upset. I feel like I did not have any choices. Juggling the care of my elders and my children felt unbearable at times. I am still recovering physically and emotionally from the time I spent caring for my parents.
There are 850,000 family caregivers like me in Washington State. We need access to respite care so that we can provide for our families. If the Long-Term Care Trust Act had been available, it would have been a benefit that my parents and I would have been able to access of $100 per day for 365 days. This money could have been used for things like respite caregivers, supporting care at places like Adult Family Homes. This would improve the lives of so many.
I am a 60 woman who has been caring for my husband, Rich who is disabled and is a diabetic.
My husband became disabled in 1996 after a workplace accident. We receive Labor and
Industries (L&I) workers compensation as well as retirement. In the beginning he was unable to
work but able to care for himself. In 2005 my husband had his first stroke. At that time I was a
postal contractor and had no medical insurance. Up until this time I was paying for our medical
bills and our prescriptions out of pocket. Due to the high cost and my husband’s pre existing
conditions we were unable to find insurance. No insurance means no one wants to accept you as
a patient. His medications continue to increase in price, my medical bills have put me into
$60,000 of debt, and my credit is gone. Rich continues to need more and more care as he is now
blind and is now considered a brittle diabetic starting to have wild swings in his blood sugar and
can go into diabetic coma.
Hs medication is much more difficult to afford and, and I now have to make choices based on
cost. The doctor told me that Rich needs someone with him 24/7. After a third stroke with no
money, and no help I had to quit my job to stay home and become an unpaid family caregiver.
Although we qualify for a paid caregiver I have struggled to find someone to take the job and the
strenuous work of caregiving has injured my shoulders and back. At this point I was able to
access health insurance but the high cost of care put us behind on other payments. I had no way
to pay my mortgage. I owed thousands, and my home equity is ran out. I filed for bankruptcy and
found a house to rent and moved, we had to surrender our home.
We have lost everything we worked for. I make weekly trips to the food bank to survive. We
have spent down all our money and are now on Medicaid. Despite my desire to be self reliant I
am unable to work and access Medicaid which puts me in a terrible position, making my future
uncertain. That is why I am an activist for Washingtonians for a Responsible Future and will
continue to work to find solutions for families who need long-term supports and services. We
need to make long term supports and services more affordable for families like mine.
Denise Mayberry, Moses Lake
For Dolores and her mother, Hortensia, caregiving has played a major role in their lives. Hortensia loved her children deeply. Later in life, she was also a homecare worker for older adults. Dolores recalls a chance meeting with the granddaughter of one of the elder woman Hortensia cared for through her final days. The granddaughter remembers to this day how lovingly Hortensia provided care for her grandmother.
Today, Dolores works as a Consultant for Casa Latina. She has helped developed a homecare curriculum in Spanish, and has provided several homecare training’s to Latino immigrants. This training includes understanding the principles, duties and proper procedures for adult home care.
The life of family caregivers can present many challenges. When Hortensia needed care in her later years, there was never any doubt that Dolores and her three brothers would care for their mother the best they could. They wanted to assure she was healthy and safe in her home, while providing her the independence she desired. All four of Hortensia’s children had learned, through the Latino culture, respect for elders.
When Dolores desired to work towards a Masters Degree in Gerontology, she chose to study in Seattle, instead of taking educational opportunities elsewhere that would separate her from caregiving responsibilities. After graduation, she accepted positions in health education for the City of Seattle and Public Health – Seattle King County. Although she had other career opportunities, Dolores often needed to step away from employment in order to ensure her mother’s proper care. For Dolores, it was an easy choice as she fondly recalls making the decision to prioritize her work and family life. “My brothers and I were there to care for our Mamá, as she had lovingly cared for us all our lives”. It was our obligation and desire.” The family went above and beyond to provide in-home care for Hortensia because they did not want to place her in a nursing home.
“Our older adults deserve the best of care, until the very end of their lives, and, at the same time, our homecare workers deserve optimal working conditions and pay.” Dolores is now caring for her partner as he navigates age-related health conditions. Knowing well, the importance of qualified homecare workers, Dolores is concerned how other adult children are going to pay for their family’s care in later years. By sharing her story, Dolores desires to be part of the solution through the State of Washington’s States Milliman Report
Eileen McKenzie-Sullivan, Tenino
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
Ava Frisinger, Issaquah
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