13 Where Should My Last Days Be?
Bridget had lived for nearly a half century in her small home across the highway from her town’s business district. Her modest house stood among a few dozen other homes in a small and mostly neglected neighborhood, the town having grown around that neighborhood, invading the farmland beyond. Most of Bridget’s long-time neighbors had passed away. Young families unable to afford newer and much better housing outside of town now occupied their old homes. Bridget didn’t have any close friends remaining in the neighborhood. But as Bridget’s health and strength began to fail, she told her nieces, nephews, and anyone else who would listen that her only dying wish was to remain in her own home.
Location
Location may not mean everything, but location can mean a lot. It’s not only in real estate sales that the rule is location, location, location. Location can also be a significant factor in the peaceful and assured course of the final leg of one’s demise. Your spiritual, mental, and physical condition likely has a significantly greater influence on your peace, consolation, and comfort over the final course of your demise. But your surroundings, including both the qualities of your physical environment and the identity and condition of the people who dwell there, can heavily influence your spiritual, mental, and physical condition. Giving due consideration, planning, and attention to your housing over the course of your demise may preserve or improve your physical environment. Ask many aging or diseased individuals their last and greatest wish, and quite a few will answer to remain to their last in their home. With planning and preparation, you may have that option or may be able to arrange a close-to-equivalent option, better than that you would experience otherwise.
Qualities
Think for a minute about the qualities most conducive to a nurturing environment, suitable for the course of one’s decline toward passing. Familiarity may top the list, provided that one’s home is indeed suitable. Some homes, such as recently rented housing with no amenities, multiple maintenance issues, and insecure or even dangerous location, are neither comforting nor consoling. But by and large, one’s long-time home is at least familiar, while no new location to which one might move in anticipation of demise generally would be familiar. Privacy is a second strong interest. Nursing home or hospital care in double or other stacked rooms can deprive one of all privacy, introducing annoying lighting and staff visits, and distressing sounds from other patients’ medical issues. Comfortable and conducive furnishings, particularly a bed or temporary hospital bed and nearby bathroom facilities, all on one level, is another strong interest. And of course, round-the-clock monitoring, good nutrition, and other available attendant care counts greatly. Keep in mind your progressive needs over the course of your decline, and plan your housing to meet them.
Home
If your home is indeed the best place to offer these qualities, at least for the early part of the last leg of your journey toward transcendence, then by all means make what arrangements you can to remain there as long as you can. Those arrangements may begin and end with securing your spouse’s commitment, with appropriate support and relief, to provide you with needed home care, monitoring, and services. If, instead, you are alone in the home or reside with a spouse who is incapable of meeting your home-care needs, then consider whether an adult child or other close family member may make a suitable temporary home companion for the same purposes. You may even have a close friend or team of friends willing to do so. Arranging for periodic in-home daycare or similar relief for your in-home family or friend caretaker may help to secure and prolong a home-care arrangement. Arranging meal services, cleaning services, lawn and maintenance services, and similar relief may also enable your in-home companion to provide you with greater attention and longer care.
Modifications
Modifications to your home may enable your in-home stay or prolong it until your greater needs require a move. Modifications can include addressing access issues with wheelchair ramps, widened doorways, lifts, railings, and other improvements or alterations. Get the advice of a qualified in-home care professional to determine those needs and a qualified contractor to make the necessary modifications. Your church or another charitable organization may have volunteer or low-cost labor, materials, and equipment to assist with the modifications. But simply moving your bedroom from an upstairs location to the main floor, even if having to use a main-floor living or office space as a temporary bedroom, may be a sufficient adaptation to enable your home stay. Beware of adding a wing or room to your home at substantial expense, if the brief duration of your decline or a sudden but necessary move to a nursing facility or hospital would make incurring that expense unwise and unwarranted.
Relatives
If your own home is unsuitable, then you may have the option of moving into the home of an adult child or other relative who has the comfortable and consoling accommodations you need during the course of your decline, and who can provide or arrange for your round-the-clock monitoring and care. Adult children can be saints in that regard. If you find that offer available to you, consider it carefully. Don’t let your adult children feel coerced or compelled to make an offer that your child cannot gracefully carry out. Your adult child may not have the home accommodations, the family structure or relationships, the time, or the other resources needed for what may be a physically, mentally, and emotionally arduous obligation, depending on your medical course and other needs. Make your own judgment regarding suitability and burden, while taking into account the nature, quality, and communication of your relative’s generous offer. Consider a trial period of a few days before you sell your own home or make other major and irreversible changes in reliance on an offer that may prove unsuitable. Trust and appreciate but test and verify.
Assisted
Assisted living may be a next-best option to remaining in your own home or residing for an interim period with your adult child or other relative. Assisted living can be especially suitable if your spouse is still capable of at least some of your care and wishes to remain close to you in your transition. An assisted-living facility generally offers relatively independent housing, in the nature of condominium-style housing, but with central food, exercise, medical, or other services on site or nearby. Assisted living may be transitional housing, out of the home and toward nursing care or the hospital. Or assisted living may prove sufficiently conducive to your continued care to enable your stay all the way through your final journey. Explore assisted-living options in your community or in another community nearer your adult children or other relatives or friends who may be able to provide additional care, companionship, and support.
Nursing
A traditional nursing facility may be a necessary option at some point during the course of your end-of-life decline. A nursing facility generally offers single- or multiple-occupancy rooms with shared or central living and dining, and on-site round-the-clock nursing services under medical direction. Nursing facilities can differ rather widely in the quality of their environments and even the quality of their staffing and services. Some nursing facilities are modified single-family residences, while others are designed and constructed specifically to serve residents needing nursing care. Investigate nursing-home options if you have them, including your visit or the visit of a trusted family member to ensure their suitability. You may, though, not have a choice and may find moving to a nursing home to be disappointing and discomforting. Even so, if you are able to remain in your own home, with or without modifications and in-home care, through the greater part of your final decline, you may require only a relatively short nursing stay of a few days or weeks before returning home or moving to the hospital, during which you are likely to make quick adjustments to your new environment while deeply appreciating the continuous nursing care. Don’t decry a nursing home move. It may be your only or best option, even if only for a time.
Hospital
Your hospital stay may also be necessary either at the end of your decline or at one or more points along the way. That may be a good way to treat a hospital stay, as a way station rather than a longer-term home. Hospital care is generally expensive, highly specialized, and reserved for acute or critical care rather than chronic or palliative care. Don’t immediately despair if your medical care providers insist on you going to the hospital and if hospital personnel commit you to an overnight or longer hospital stay. Your hospital care should provide you with all medical and nursing services you need either to improve your condition sufficiently to return home or to move into an assisted-living or nursing facility, if that improvement is possible. Your hospice care team can help you, your family members, and your medical team both integrate in-hospital palliative and spiritual care into your hospital medical care, and assess and arrange for any possible hospital release to better accommodations.
Return
When moving out of your home and into assisted living, a nursing facility, or the hospital, preserve the option of returning home for a final stay, if you can. In some instances, a hospital stay may be necessary to at least briefly arrest and stabilize the diseased condition causing your decline, after which your return home may be possible. Your hospice care team should have the personnel with the skill and experience to evaluate you, your condition, and your home and other circumstances to recommend and accomplish that return. In that way, you may be able to satisfy your preference of spending your last days in your own home, surrounded by a familiar and comforting setting, including family members and friends.
Finances
The above discussion has not yet broached the subject of your ability to pay for the housing that you prefer over the course of your final decline. If you own your own home and have the means to satisfy tax, utilities, and maintenance obligations, then remaining in your home may not be a financial challenge. Conversely, if your home’s carrying costs are substantial but you have substantial equity in your home, then downsizing may free up finances to improve your housing in another location. You may, for instance, be able to finance attractive assisted living by selling your home, relieving yourself of its carrying costs, and devoting your gain plus your Social Security and other retirement income and assets toward your new housing. You may, alternatively, be able to afford a better nursing facility with the sale of your home. You may also qualify for Medicare or Medicaid funding of a nursing facility stay, but generally only after spending down assets under complex rules.
Assistance
You can see from the above discussion that your housing over the course of your decline is plainly a big and potentially complex issue. Don’t try to handle it all alone. Get the assistance of your close family members and of professionals who know these needs and how best to meet them within an appropriate setting. Your hospice team is your primary resource for evaluating and helping you arrange for housing. You may, though, also need the advice and assistance of a Medicaid-planning attorney to qualify for government payment of a nursing facility stay or other nursing services. Assembling a sound team of professional advisors around you, with or without the help of your family members, can make a big difference in your ability to ensure comfortable and consoling housing through the course of your final decline.
Reflection
Do you believe that you may be able to remain in your home through the course of your demise? What qualities does your home have that would make it your preferred residence for the duration? Are your preferred housing qualities more readily available in another location? Would modifications to your home enable you to prolong your home stay, if you so desire? Do you have a spouse or other family member at home to care for you, or can you arrange for family members or friends to provide for round-the-clock in-home monitoring? Do you have close family members who would welcome you in their home, under suitable and stable circumstances? Would assisted living be a better transitional option for you? Do you expect to need nursing-home care during the course of your decline? If so, have you identified and gotten on a waiting list for that facility? Have you confirmed your ability to pay for assisted living or nursing-home care, through sale of your home, your other assets, or private insurance or government programs? If you hope to return home, have you expressed to your hospice care team your desire to do so?
Key Points
Your housing during your final decline can influence your course.
Seek familiar, comfortable, consoling, secure, and suitable housing.
Consider arranging to stay in your own home for as long as possible.
Home modifications may enable you to remain in your home longer.
Cautiously evaluate a relative’s offer to come stay with them.
Assisted living may provide an attractive transitional housing option.
Investigate and compare nursing facilities if you require that care.
Treat a hospital stay as only a brief transitional necessity.
Try to preserve the option of returning home for last care.
Let a team of professionals assist you with the big housing issues.