Is Remaining at Home Overrated for Older Adults?
by Corinne Rieder
Tuesday, May 12, 2009 13:53
Recently I spent four days with my frail, 90-year-old parents, and I’ve concluded that for many, if not most frail older adults, remaining at home is overrated and may even be dangerous to their health. My view goes against not only the strong preferences of my parents, but the majority of people, young and old, in our country.
Regarding my parents, nine years ago it was clear to my brother and me that they were no longer able to remain in their home without assistance. They have 17 chronic diseases between them: blindness, deafness, normal pressure hydrocephalus (NPH), and stroke to name just four. My father had been using a wheelchair most of the time, and my mother had been diagnosed with Alzheimer’s disease. They would not consider exploring an independent or assisted living facility. The compromise we finally reached was that we would move them to a new, “wheelchair friendly” house two blocks from my brother’s home in Victorville, California, a community about two hours north and east of Los Angeles.
This arrangement worked well for the next three years, until my parents became so frail that they needed full-time care. My brother, who has six children and holds down two jobs, was going over to our parents’ home as many as two or three times a night–whenever my father would fall on the way to the bathroom. Again, their preference was to remain at home. For the past six years our parents have been cared for by live-in direct-care workers. My father, who is now bedridden, has made it abundantly clear that he wants to die and spends almost all day in bed. He has refused any physical therapy or any exercise program that could have restored his ability to walk after successful surgery for NPH.
Would they have been better in a good assisted living or skilled nursing facility? Yes. There are three reasons. First, they are socially isolated in their home, despite frequent visits by my brother and his family. In an assisted living or skilled nursing facility, they would have had more social activities, including interaction with other people–residents as well as an array of health care professionals. Second, they would have more structure in their lives and better care, including exercise, required bathing, and clean rooms. Third are the financial and other stresses that come with care provided in the home, e.g., a legal suit by an aide who may have been injured using a Hoyer lift, the stealing of my parents possessions, and the almost constant turnover of staff.
If I were to do it over again, I would have strongly insisted that my parents go into assisted living when they were in a condition that would have allowed them to benefit. Better yet, I wish there were an On Lok/Pace site nearby or that PHI could help strengthen the direct care workforce and the organizations that employ them in Victorville.
Chris Langston says:
May 14th, 2009 at 11:14 am
It is common to hear people say that they would “rather die than go to a nursing home.” The grim ironic comment that usually comes to my mind when I hear this is that for most people it isn’t the choice – you get to go to a nursing home AND you get to die.
Over 40% of us will spend time in a nursing home and I don’t know how many more will spend time at a supposedly less institutional (but definitely less regulated assisted living facility). For about half of those people it will be a long, residential stay ending when life does.
We can certainly reduce the use of nursing homes, currently running at about 4% of the older adult population – I’ve heard experts talk about 2% as a good target. But at 2% of the growing older adult population as well as those who need skilled care while younger, we are still talking about around 1,000,000 people. This isn’t going to go away no matter how much people wish it to. Therefore, the quality of services and health care in nursing homes needs to be improved.
The Hartford Foundation and many others are trying to support developments that will make institutional long-term care better for those irreducible number who need it. You can learn more about one of our efforts at http://www.geriatricnursing.org/hcgne/nhc.asp
Thinking back to 2002, I remember being on a site visit to the Cabrini Center for Nursing and Rehabilitation conducted by another grantee, The National Health Policy Forum, where we visitors heard a series of presentations under the overall title “TOO MUCH GINGER IN THE CONGEE: ADJUSTING TO CULTURAL DIVERSITY IN LONG-TERM CARE FACILITIES.” The point that the presenters made is that is a facility is good enough (on lots of dimensions) even New York’s Chinese community, which is perceived as very unwilling to use residential long-term care, would be willing to go to a nursing home and might even like it there. I would like to think this could be true for everyone.
gromero says:
May 15th, 2009 at 12:37 pm
Cory, very well written. These are hard decisions that we all will have to make in life. The more tools and resources that are available to help in making quality decisions and the awareness is a very good starting point. Gary (Piper Trust)
Aging at Home… Is It Overrated? « The Future of Aging Blog says:
June 2nd, 2009 at 10:01 am
[...] recently read a blog post by Corinne Reider, the executive director and treasurer at The John A. Hartford Foundation.? The [...]
KarenSauvigne says:
June 11th, 2009 at 1:30 pm
Overrated, indeed. Long ago, before I saw my mother’s capacity to live safely at home progressively deteriorating, I realized that for me, personally (never mind for Mom, or for general “frail older adults”), living alone, isolated and in fear that I’d need help but be unable to get it, was not attractive. I’m a child of the 60s, so I know a bit about “communal living.” For years I’ve been telling friends that I would much rather live with a group of other old people, and enjoy life with my peers — even if the food is not good — than be on my own. Then I saw Frederick Wiseman’s 1999 film, Belfast Maine, and actually got an image of the type of warm and interactive community I wanted to live with when I age.
I think those of us who work to create options for older adults could do our efforts a service by imagining the actual pleasures of living with others in a community as we age. For me, it will be a positive choice.
mdforster says:
June 20th, 2009 at 6:52 am
Cory’s case is compelling. A “one size fits all” approach to care is absurd on its face. Sensitivity and common sense should trump ideological commitment to one or another approach, whatever the motivation.
My 86-yr.-old mother remains independent, with very little assistance, and at present hates the very thought of group care. However, a variety of conditions make it all too easy to imagine that at some point an assisted living arrangement would best suit her needs.
katharine briar-lawson says:
July 5th, 2009 at 1:46 pm
Cory raises very important and empirical questions. Until we have sufficient data to answer her questions, many of us cite our own experiences as evidence that she is on the right track. While congregate care is not for all, I have watched my 89 year old father blossom after being isolated and living alone. In a continuum of care setting he has emerged with new energy, language skills and a powerful social network.The structure, social engagement and stimulation have been a real boost to him and I suspect will help extend his life. Certainly the quality of his life has improved. We never would have expected such marked improvements so this has been a learning experience for those of us in our family who had reservations about his move.
Ursula says:
August 14th, 2009 at 6:07 pm
I am a social worker by profession, and was a care-giver by choice. My father had two health episodes that left him with malidies in body but not in mind. He hated the thought to going to a rehab institution even for the 60 day stints he had. Because I believe in both personal choice and honoring my parents wishes, I provided his care in-home for over two years. (If I were his professional social worker, I would have been forbidden to even try to honor his wishes. In fact, I had to basically fight for his right to make the decision, though, I didn’t agree with it). Honoring his decision, meant that I had to have a very difficult talk with him about the fact that he could get in trouble medically, and no one might not be able to reach him in time. He stated he understood this when he made his decision and was okay with this fact. My day looked like this… rise early, go to my father’s home, get him up, toileted, washed, dressed, medicated and fed. I washed clothes, and cleaned his house as I went along each morning, then I went to work. We hired someone to care for him in the evenings and put him to bed. His girlfriend assisted on the weekends. It was tough, but with prayer and focus on his needs instead of my wants, we made it through. A part of my prayers were answered with the VA support which paid for his assistive equipment. This equipment made overwhelming tasks do-able. Though he passed a couple of months ago, due to a medical crisis when no one was available to him, I believe he was content being in his home. Ultimately, no one is going to live forever, society needs to honor this fact and stop trying to find fault when it happens. We should honor the wishes of our loved ones and be okay with the outcomes.
Andrew Safyer says:
August 25th, 2009 at 11:01 am
Hi Cory,
I agree completely with what you wrote on the blog both personally and professionally.
As you may recall, my mother is in advanced stages of Alzheimer’s (after being diagnosed about ten years now) and has been able to stay in her home with a 24 hr caregver for the past four years. The woman who takes care of her, Betty, is wonderful and my brother and I are fortunate that she is able to take care of my mother in the way she would her own mother. I try to visit my mother frequently despite some distance and check in on her through the caregiver on a regular basis. When my mother was first diagnosed, I felt strongly that my mother stay at home and upon reflection I completely regret that decision. She loves being around people and now is incredibly isolated. If she had been put into a skilled facility early on she would have been able to be more engaged with people and still receive good enough care.
Interestingly, at our most recent of our suburban aging group (that has been meeting regularly as we begin to develop a mission/vision, goals and objectives), the discussion shifted to this same idea…. so many of the residents of Nassau County wanted to remain at home and the professionals around the table talked about how this might not be the best idea for all the same reasons you wrote about. I am going to share your blog note with them at our next meeting.
Thanks again for your support.
Andy
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Melissa Rowley says:
August 3rd, 2010 at 9:10 am
I was on your site researching Care Transitions articles when I came across this blog about parents staying at home being overrated. I couldn’t agree with you MORE! As a matter of fact I am writing a book about it! Your story also struck a chord because I diagnosed my father with NPH prior to his passing (I am not a physician) and he also had a successful shunt surgery. I then brought my parents to one of the best Chicago Rehab facilities; but it ended up being a futile effort because his body and mind had deteriorated beyond repair. The nightmares I have experienced with my 92 year old mother at home now with 24 hour care have provided my husband and I with jaw dropping stories since 2005! You seem so appreciative of your brother, of which I am so envious; my sibling rivalry experiences over these past 5 years have mounted even more stress to this already stressful situation. Thank you for the post!