At DAWN, we believe in preserving dignity and autonomy and allowing people to age in place for as long as possible. However, it is not always feasible to keep someone who is experiencing dementia at home.
Being the primary caregiver of someone who is experiencing dementia is exhausting, but it is especially debilitating if you are the spouse. Lengthy and intimate relationships come with expectations and interactions so deeply ingrained they are no longer conscious, yet dementia changes a person’s communication and behavioral patterns in random ways. These randomly-altered dynamics cause immense stress for caregiver spouses. Often it’s necessary to move the person with dementia into care in order to avoid ruining the health of the caregiver spouse. Here at DAWN, when we are coaching families who must move someone into a care facility, we start with the following two recommendations.
Select a facility based on management philosophy. Having a high staff-to-resident ratio is important, as is census, because these facts point to the facility’s track record in meeting residents’ needs. But you should also try to make an appointment for a chat with the facility director. You’ll find out immediately how accessible the director is for resolving problems and discussing your loved one’s care.
If you succeed, one question you want to be sure to ask is how to coordinate in-house services and outside providers. If the director is resistant, you’ll know that his or her management philosophy is one of proprietorship rather than assistance (see my May 2nd blog titled ‘That Care Facility – Hotel or Home?’). More so than in many other businesses, the attitude of the person in charge of a care facility trickles down and affects the attitude of every person on staff, right down to the part-time weekend caregiver. You want a facility where all staff members see themselves as there to assist you in making your loved one’s life as fulfilled and comfortable as possible.
Become a fly on the wall. The only way you can truly know whether a facility will be a caring and supportive place for residents is to spend time there yourself. If you haven’t chosen the facility yet, make unannounced visits to your possible choices before breakfast and stay for the meal. You’ll see the staff at a critical time, when every resident needs to be helped through a morning routine and to breakfast. Drop by in the evening and on weekends. You’ll see the part-time, less experienced staff in action. Spend time just sitting in the common areas and when staff ask you if they can help you, say you’re waiting for someone, or resting your feet, or checking email. If they are uncomfortable with visitors, you’ll know that family and friends would not feel welcome if your loved one moved in.
Once you’ve decided on a facility and are ready to make the move, arrange to spend full days there for at least the first two weeks. Arrive early in the morning and stay through bedtime. Take part in some activities and meals, but help your loved one make connections with other residents, too. After a few days the staff will no longer notice you and you’ll be able to see what’s really going on. You’ll learn which staff members develop rapport with your loved one and who to turn to for help and direction. You’ll gain a sense of the routine, see which shifts have less or more oversight, and understand how behavioral and medical issues are dealt with. The only way you’ll truly know what your loved one is experiencing is for you to spend full days there yourself.
Next week, we’ll look at additional ways to make a move less emotionally distressing for a loved one or client.