Anti-ageism activist, social worker, and guest blogger Alice Fisher is back with a moving and deeply informed piece about why aging-in-place isn’t the panacea being so widely promoted. I wish my mother-in-law, who turns 92 next week, would read and believe it. She and Bill, her husband of 69 years, have been paying for long-term-care insurance for decades in order to be able to remain in their apartment. When I said to Bob, “Your mom would be so much happier in a home after your dad dies,” his response was instant. “She’d be happier in a home now.”
Surveys show that most people when asked prefer to spend the last years of their lives in their homes rather than in a community or institutional setting. What they fail to consider…or don’t want to consider…is the prospect of being homebound and spending their last years alone with only an aide for companionship. As human beings, we are social animals who are meant to interact. Living in isolation, for most of us, is detrimental to our health and has been shown to be one of the leading health risk factors contributing to the downturn in the health of older adults.
Understanding that most state governments no longer want to be in the nursing home business and that it is their assumption that it is less costly for both the government and the elderly to remain at home, I can see why the aging-in-place movement has gathered so much steam in recent years. Prevailing ageism also factors in when those who need assistance with activities of daily living choose to protect themselves from the ageist attitudes that pervade the public discourse on “old people.” It feels safer to stay at home.
There is another secret that the aging industrial complex does not like to talk about…the cost.
If (I will come back to the “if” later on) an elderly person can get the optimum care and needs help 12-24 hours a day, adding this to the overhead of keeping a home, the cost can be astronomical. Because of longevity, the soaring costs of medical care and personal assistance, and the lack of a good long term care program in this country, many seniors today run out of financial resources before the end of life. In my role as a political social worker, I know that Medicaid was not originally set up to be a long term care provider; and I am also concerned about the financial strain this puts on government. There has to be a better way, and boomers all over our country are searching for better alternatives for living out their lives.
Why do I feel so strongly that aging-in-place is not the panacea that our government, our media, and the many senior service providers around the country are promoting?
My story starts with Hurricane Sandy. At the time that Sandy struck the east coast of New York, my elderly parents were aging-in-place in their co-op apartment in Long Beach on Long Island’s south shore. My dad, who has multiple chronic conditions that keep him wheelchair bound and unable to take care of his own personal needs, had an aide. His financial resources had already been depleted by the cost of his care for the two previous years, and he was receiving Medicaid benefits for home care. Although he really needed 24/7 care, the most that Medicaid would approve was 12 hour live-in. (This is where that “if” comes in). Twelve hour live-in means that the aide lived in with my parents but only provided care for 12 hours a day. It seems that my 90 year old mom was determined to be able to care for him the other 12 hours. Well, let me tell you, a 90 year old cannot care for another 90 year old without compromising their own health and well-being. As a result, my parents became emergency room regulars at Long Beach hospital, just a few blocks from their home. In turn my sister and I were also emergency room regulars. A couple of months before Sandy hit we began to have a discussion about aging-in-place and that it might no longer a viable option for our family. And then came Sandy.
When people ask me about aging-in-place, I tell them, “It works until it doesn’t.”
After evacuating my parents with aide in tow and all the attendant chaos around relocating them, we came to the realization that they could not return to their home. All of the services they used were compromised or non-existent. The hospital was washed away and has not opened to this day. My mom’s doctor’s office was under water, leaving her with no medical records. Fortunately my dad’s medical care was being provided at home by the Veterans’ Administration, so his care could continue without too much interruption. The only blessing we could see at the time was their car, which floated down the road with every other auto in Long Beach. With the advocacy and support of my colleagues in the aging community of NYC, the Hebrew Home at Riverdale came through and provided a permanent home for mom and dad.
My mom, who passed away this past January, spent the happiest year of the last ten years of her life there. She was 91 years old. Her life in Long Beach was becoming more and more an isolated existence. Most of her friends had died and the burden of caring for my dad kept her from leaving her apartment except for her trips to the supermarket and doctor. With the responsibility for my dad lifted, she was now free. Although frail and deaf, her cognizance was excellent. She made wonderful friends, joined in activities, began going to synagogue on Friday nights, went on shopping trips, and began to care again about what she wore and how she looked. Her best friend at the Hebrew Home was Rose, who was born deaf and was teaching my mom American Sign Language. She attended several 100 year old birthday parties. She and my dad celebrated their 70th wedding anniversary at the Hebrew Home with all their new friends in attendance. The other thing I noticed was that she was secure about having her own needs met…no more 911 calls and emergency room visits. She fully embraced her new home.
My dad, who needed 24/7 care resided in a different section of the facility, where he remains today. All the buildings on this beautiful campus are connected to each other, and my mom saw him every day and was his best friend and advocate. The common denominator among my dad’s floor mates is their inability to care for their own physical needs. There is, however, a huge cognizance spectrum. My dad seems to be located about mid-point on the spectrum. It is easy to discount the inner humanity among these people who are often confused, do not make sense even when talking to each other, and sometimes do not even seem to be aware of their surroundings. I must admit that my own ageist attitudes often came to the surface when I would visit his floor. One extremely emotional incident changed my entire perception of who these people are.
My mom died of congestive heart failure. She did not suffer much at all. She had only been diagnosed about three months before her death and was only ill the last three weeks, spending the last week in the hospital. Although we tried to prepare my dad, his memory issues prevented him from fully grasping the situation. After she passed away, my sister and I went to tell him. He was in his dining room just about to sit down to dinner. We wheeled him out to a private area and broke the news as gently as we could…but there really is no gentle way. He reacted as was expected and appropriate. It was very sad. When we were feeling the need to leave, dinner was over; and most of his floor mates were out wandering the halls in their wheelchairs and with their walkers. As you can imagine, we were having a difficult time leaving. I walked over to one of the aides, saying, “We really need to go, but it’s so hard for us to leave him alone and just say ‘bye dad, we’ll see you tomorrow’.” She waved her finger and said, “No, no. You see all these people. They are just hovering, waiting for the two of you to leave.” As we waited for the elevator, my sister and I could see into the area where we left my dad. One by one, each of his floor mates came up to him, and each in their own way told him how sorry they were. Some just patted his arm, others hugged him, and as we were getting on the elevator, we watched the aides help them form a circle around dad. I turned to my sister and said, “He’s not alone.”
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Alice Fisher, M.S., M.S.W. is an aging Boomer who works in the office of NYS Senator Liz Krueger, where she developed and oversees “Senator Liz Krueger’s Roundtable for Boomers & Seniors” and councils the Senator’s senior constituents on issues of housing, healthcare, quality of life, and end of life. A long time social justice advocate, Alice is developing anti-ageism programs and working with a diverse grass roots group in New York City to create awareness of the ageism that permeates our culture. Read her Call for Radical Aging here. http://www.thischairrocks.com/?q=post/call-radical-aging
For more information, contact Alice at confrontingageism@gmail.com, and visit the Radical Age Movement website and the Radical Age Movement Facebook page.
Thanks for sharing your story, Alice! While I support aging-in-place, you bring up great points that people may not consider. My questions I have are: Is aging-in-place detrimental to health if the senior lives with family or has an in-law suite in the home? What if the senior is somewhat independent and volunteers during the week? What if the family decides that it’s their responsibility to care for their loved one? Aging-in-place also happens in other cultures and I’m sure we won’t say it’s detrimental to health. I bring up these issues because while our personal stores are powerful, general statements can harm important issues. Sometimes, aging-in-place won’t work for certain reasons and I understand that. Just like institutional settings won’t work when families don’t visit their loved ones, the high rates of elder abuse (which can also happen in aging-in-place), etc. Until society revolutionizes the way we view aging and gives elders the respect they need, these issues will always exist. I’m also careful about language especially when it pits one thing against another since both can be positive.
Thanks to all for this post. My parents were distinctly determined to stay at home, and in NYC, as they moved into their
80s with a variety of ailments. But, my brother and I lived 4 and 12 hours away, and they had no local community left. They gradually became virtually apartment-bound. A home health aide was apparently lovely at first, and much appreciated as she cooked for them, ran errands etc. But, she wasn’t taking them to museums or the symphony, and, increasingly, she was encouraging them to see themselves as dependent on her. Once, when I was visiting and asked my Dad to come up to Rhode Island for the summer and live in an independent living apartment for a few months, she told him afterwards that he and Mom could never do that, as they were too disabled. Well they did, and are there, still. Lots of grumbling for sure, but they have a social life and access to all kind of services and events. Of course it’s not the NY Philharmonic, but its not nothing. And I am now 20 minutes away, and we see each other every few days. I think the myth of the moral value of staying independent can be very damaging. We are never actually independent! When the gift of a long life carries with it some disability, living closely with others, and with concentrated services, can be as close as we can get to a good situation. Finally, we did not choose the Hebrew Home (a few minutes from their long time apartment) because they would have separated my parents based on health status, which seemed to make them patients first and a couple second. They wouldn’t do it.
Hi,
I want to thank you for sharing your story Alice. Your article was interesting because many people that I have come across are on the opposite side of aging in place. It depends on the person though. For instance, I know that my father would have preferred to stay at home because that is where everything familiar is. Furthermore, doctors recommend that, psychologically, it may be beneficial for people to stay at home.
There are 24-hour live-in services where the caregiver splits their shift with a second home health aide. This means the person receives treatment throughout the 24-hours, and there is no break in between. However, each case is different. Honestly, the idea behind home care services is to prevent the cost from being too high and to ensure the highest quality standard of living.