Your staff may know how to help a new resident feel comfortable in their new surroundings. But families of new residents also need an orientation as they assume a new role in their loved one’s life.
First, the sons, daughters and 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. Most moves are based on necessity.
Beyond ensuring that the actual move is as physically and psychologically stress-free as possible for the new resident, the family should take care to allay fears the person may have about moving. Those fears may include the increasing loss of their independence and the loss of identity generated by relinquishing items that were part of their home. These fears can be delicately addressed by trusted family members prior to a move.
Although the move can be traumatic for incoming residents, it can be equally traumatic for family members. Residents’ families need to know these five things:
1. Family is still needed, in fact, more so
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, but none of them can 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 and other options.
2) Family can help avoid the three real killers
Heart disease and cancer are credited for nearly 50% of deaths in America. But William H. Thomas, creator of the Eden Alternative, says the greatest “killers” are not diseases. His approach is to improve the wellbeing 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 a 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 an amazing opportunity for family to step away from the caregiver role and again become a spouse, a son or daughter. 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 is 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, “limbo,” the time between residential and medical care, is a liability. Families should be present at medical facilities whenever possible, as they are not only the keepers of their loved one’s valuable medical history, but their loved one’s medical care needs must be closely monitored. 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 these two valuable services
Palliative and hospice care both aim to ensure 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 but often misunderstood. Their use deserves research and a thorough understanding so that the family can rely on them quickly when needed.
5) Family should have 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.
Trish Laub is the creator of the Comfort in their Journey series, including three books, a presentation and workshops. She consults on Alzheimer’s and dignified care through end of life.
