Five Principles Residents’ Families Need to Know
/By Trish Laub
It is an adjustment for everyone involved when family members review their circumstances and realize that certain factors --such as geographic distance or work schedules --indicate that the safest and best place for their loved one is not at home but in a residential community equipped to meet the person’s care needs and offer the best quality of life.
First, the sons and daughters or other relatives who have assumed responsibility for a family member must know how to prepare them for the move. Approximately 80% of Americans prefer to live their lives out at home, if possible. For a variety of reasons, only 20% can remain at home. Therefore, most moves are based on necessity. Beyond ensuring that the actual move is as stress free as possible for the new resident, physically and psychologically, the family should take care to allay fears that the person may have about moving. Those fears may include the increasing loss of their independence and the loss of identity generated by relinquishing some items that were part of their home. These fears can be delicately addressed by trusted family members prior to the move.
Although the move can be traumatic for the loved one, it can be equally traumatic for the family members. Often, family members feel guilty and judged as if they are shirking their responsibilities and lacking warmth and compassion. That is not the case. Families need to know these five things.
1) Family is still needed, in fact moreso
Their loved one still needs them, maybe even more than before! Family is often the resident’s anchor to reality. The presence of family makes their loved one feel valued and safe. A residential community offers many invaluable benefits and amenities, none of which replace the connection and interaction offered by family.
While residential communities are one very important piece of the care puzzle, the family remains responsible for overseeing the entire puzzle. When initially assessing a community’s fit with their loved one, it is especially important for the family to be open and honest about the care needs required by their loved one. Not doing so can lead to additional costs and may result in a move. When possible, bringing their loved one for a visit to a community prior to making a decision can help provide a sense of whether it is the right place for them.
Even with the best fit, the resident’s needs may change. For example, if a loved one enters independent or assisted living, and then needs a memory care option, a move may be required. The current community may not have a memory care option, or be able to assist with finding one. Similarly, not all communities are set up for end-of-life care. Families may need to know about hospice (see #4 below) and other end of life options for their loved one. The responsibility to find a new living situation when the loved one’s needs change may fall on the family. Another family responsibility is discussed in #3 below.
2) Family can help avoid the three real killers
Heart disease and cancer are credited for nearly 50% of deaths in America. William H. Thomas, creator of the Eden Alternative, says that the greatest “killers” are not diseases. His approach is to improve the well-being of elders and their care partners by eliminating the plagues of loneliness, helplessness and hopelessness in the communities in which they live and work. These emotions are what result in the loss of a reason to live.
Loneliness is thought to be a bigger health risk than smoking or obesity. It is critical for family and friends to engage with the resident and for them to encourage engagement with others. This is increasingly important as mobility and independence decrease.
It is natural for family to want to help their loved one. It is critical to allow the resident to remain as independent as possible by continuing to handle all the tasks in the realm of their capabilities. If the task helps someone else, it is particularly valuable in maintaining the resident’s feeling of self-worth. We need to allow those who are developing deficits, even if only arthritis, the same patience we allow children as they learn a new skill.
Finally, hopelessness can be avoided by preventing feelings of loneliness and helplessness, by ensuring quality of life and providing events to look forward to, such as visits and outings.
3) Family will still have situations to manage
Residential communities offer the amazing opportunity for family to step away from the caregiver role and again become a spouse, son, daughter or relative. Family should take advantage of the time while their loved one is well: take them out or pamper them. If there is a day when a resident requires off-site medical care, it may be the responsibility of the family to oversee that care.
Residential care and medical care do a sort of handshake, a handoff of the resident’s care, with a reciprocal handshake after discharge from medical care. A lot can go right in medical facilities, but there is always the potential for things to go wrong. Additionally, the “limbo,” the time between residential and medical care, is a liability. It is advisable for families to be present at medical facilities whenever possible, as family members are not only the keepers of their loved one’s valuable medical history, but their love for the patient makes them the best monitors of whether all medical care needs are being met. If a family is not able to attend appointments or monitor in-patient medical facility stays, they should consider hiring a professional patient advocate.
4) Family should be aware of two of the most valuable services available
Palliative and hospice care are two services with the goal of ensuring a patient’s comfort. Palliative care services are available to anyone with a life-limiting diagnosis who is continuing treatment. Hospice care is available to anyone with a life-limiting diagnosis and a prognosis of less than six months who is no longer seeking curative treatment. They are invaluable services, which are most often misunderstood, and which deserve research and a thorough understanding so that the family can utilize them as soon as possible.
5) Family should have the tough conversations about end of life … now
When a loved one passes away, their family is often left asking “Did I respect their final wishes?” and “Did I make the right decisions?” End-of-life planning is as much for family caregivers as for their loved ones. Preparation and estate planning relieve the family of uncertainty and ensure that their loved one’s wishes are known. With instructions at hand, the family can be present and focus on providing their loved one the dignity that is often denied to the process.
In short, residential communities offer the opportunity for family members to return to being family as opposed to caregivers. But the family’s responsibility for overall care management continues.
