I have not posted for a while because I’ve been in the middle of my own transition into the “eldercare” world and have been occupied with the many detailed tasks it involves. In a months’ time, my partner and I will move to an independent living community in Maine. It is the first step away from our lives as single-family home owners in a town near Boston, and toward life in a retirement community. We’re making this move in our mid 60’s and early 70’s because we want to do so while we still have the physical strength and mental fortitude to carry it off. Our observations of other aging couples have taught us that we don’t want to leave this move too late and therefore, by default, shift the burden of making and carrying out such decisions to our loved ones.
Ideally, we would be moving to a CCRC. Continuing care retirement communities (CCRCs) have accommodations for independent living, assisted living, and nursing home care, offering residents a “continuum of care.” A CCRC would ensure that the transition from one level of care to the next, as necessary, would be relatively smooth. However, our financial situation does not make this option possible. So, we will take this first step, and hope for the best (that we will have acceptable and feasible choices open to us) as we age and our health and strength decline.
I want to wrap up my “exposé” on nursing homes, eldercare and respect by touching briefly on four topics:
- Rehabilitation, Respite and Long-term Care
- Home Care and Hospice
- The Top One Percent
Respite, Rehabilitation and Long-term Care
Not everyone is aware that most nursing homes offer at least three different kinds of care:
- Respite – a brief stay of a week to several weeks offered to a patient so that his or her primary caregiver, usually a family member, can have a respite from caregiving responsibilities. The patient plans to return home though there is always the possibility that a respite stay may turn into long-term care. For reference see: http://www.aplaceformom.com/respite-care
- Rehabilitation – a transitional stay in a nursing home for patients who have been discharged from a hospital and need physical and/or occupational therapy before they are able to return home. The duration is usually relatively short.
- Long-term care – a “permanent” stay, when the patient is not expected to recover enough to return home, and will need ongoing nursing care.
Different durations of nursing home stays are funded differently. Often respite care is privately funded, rehabilitation is funded by Medicare, and long-term care, especially for those without private resources, is funded through Medicaid.
In most nursing homes, different types of patients share the same rooms, floors and common spaces. This can present problems, particularly for those receiving respite or rehabilitation services. Some fear that if they do not maintain their current daily living skill level or achieve the goals set for rehabilitation, they may end up becoming long-term care patients. Because they are distributed throughout the nursing homes’ population, they do not interact regularly with others who share their skill level and a sort of lethargy and hopelessness may set in. For long-term care residents, who see respite and rehab patients come and go frequently, continuity and stability are sacrificed, and confusion can contribute to mental decline. I can’t imagine a solution for these problems without an enormous infusion of funding, and that is inconceivable in the present political and social climate.
It goes without saying that a nursing home patient who has an active, attentive, external advocate will receive a much better level of service than one who doesn’t. If a friend or family member visits on a frequent, though preferably unpredictable, basis, and interacts with the nursing staff concerning the quality of care the patient is receiving, the quality will improve. It is essential that the advocate attend care planning meetings on a regular basis, and respectfully speak up about concerns
This is not an easy role to play. Firstly, most families would prefer to care for their elderly relatives at home and they may feel guilty about being unable to do so. Often all adults in the household work full-time and can’t afford to quit jobs and stay at home with a parent who requires care or supervision. Sometimes the layout of the home makes it impossible for a disabled person to live there without expensive accommodations. Once the decision is made to place a parent in a nursing home, it is often difficult to find one near work or home. Transportation may be a barrier. The “out-of-sight-out-of-mind” syndrome also comes into play. As time passes, it is easy slip into a less frequent visit pattern. Sometimes it is difficult to visit mom and see her in soiled clothing, staring vacantly into space, losing weight, and perhaps angry with her children for having placed her in a nursing home.
It is very important to rise above all these obstacles and emotions and be disciplined about visiting and advocating. It is the only way your loved one will receive acceptable care. I speak from experience. I was a guardian for a developmentally disabled, mentally ill woman who lived in a variety of nursing homes for the last 10 years of her life. Also, my mother in law spent her final two years in nursing home care. I drove hundreds of miles and spent countless hours in visits, meetings and phone conversations. I moved my disabled friend twice because neglect threatened her life. I played the advocate role, as arduous and uncomfortable as it was at times, because I believed that they both deserved care that reflected respect for their dignity as human beings.
Homecare and Hospice
Homecare – See http://nextstepincare.org/uploads/File/Guides/Home_Care/Guide/Home_Care.pdf
Hospice – “Formally speaking, hospice care is that which can be provided to patients with a life expectancy of six months or less. Rather than seeking a cure, hospice care aims to make their remaining time…as comfortable and as meaningful as possible. This may mean pain relief and nursing care, but also includes emotional support and help with everyday tasks…the needs of family, friends, and caregivers are also taken into account.” Center for Hospice Care, Southeast Connecticut
My experience with homecare and hospice is limited. My friend Dorothy signed up for both shortly before her death. The intake process was time-consuming and complicated, the scheduling and set up for care slow, and from Dorothy’s end, confusing and disorganized. The in-home caregivers were invariably kind and well-meaning, but they did not always have a nuanced understanding of the problems and needs of the elderly and dying, and they did not relieve the burden on Dorothy’s family very much. Coordinators responsible for handling applications and adhering to government funding regulations juggle competing priorities and needs, accounting for delays that can be very frustrating for family caregivers. I believe that the quality of both homecare and hospice varies dramatically from one region or location to another, regardless of income level. My sister, who enrolled with homecare and hospice in Nova Scotia when my father was dying, experienced some of the same problems as Dorothy’s family in Massachusetts. In our family’s case, however, the counseling and emotional support available to us during my father’s death was superb.
Despite these caveats homecare is, for many, a step forward in eldercare, enabling them to live somewhat independently in familiar surroundings, to have a measure of control over their lives, and, thus, to preserve their dignity. For those who wish to die at home, hospice is a welcome alternative to a hospital.
The Top One Percent
On a cloudy day in early April I went to visit a friend in a CCRC in a wealthy suburb of Boston. My friend was in the “skilled nursing facility” on the premises – the name commonly used for newer, “upscale” nursing homes affiliated with CCRCs. While I waited for his daughter to join us for the visit I decided to take a cursory tour of the other eldercare options on the premises. Besides independent homes, the community also included several large independent living apartment complexes with a “clubhouse” for central services like meals and programs, as well as an assisted living complex. I merely stepped into the lobbies of the apartment clubhouse and the assisted living building. It was like stepping into another world. A resort atmosphere prevailed in both. Dining rooms were “high-end” restaurants with cafés or bars nearby. The fixtures and furniture were luxurious. The receptionist was professional and welcoming. The residents all looked healthy, fit, active and happy – from a cursory glance.
The skilled nursing facility where my friend was undergoing rehabilitation after a hospital stay was also extremely well appointed. Granted, the facility had just opened, so everything was new and fresh. The staff-to-patient ratio appeared high. The staff we encountered were respectful and professional. My friend, though obviously ill and tired, was alert, dressed cleanly and appropriately in his own clothes, and oriented to his surroundings. His private room was spacious and attractively decorated. The art was of surprisingly good quality. We went from his room into a quiet and well-furnished lobby where we had a conversation that I will remember forever, as my friend died a few months later.
I came away from that visit – that cursory glance – wishing that every nursing home were just like this one. I do not know how my friend paid for his stay at the skilled nursing facility. It’s quite possible it was covered by Medicare, but though a gentle, kind, and humble man, my friend was wealthy. His family had the resources, influence and “know-how” to get the very best care for him. Would that you and I – indeed everyone – could get the same kind of care for those we love, and for ourselves.