Long Term Care

Dementia, To place or not the place?

To place or not the place? If to place, then when and where? For an adult child of an Alzheimer's victim these are tough decisions to make. It is difficult for a mixture of reasons; ranging from emotional conflict to financial concern. Alzheimer's disease has been called the long good-bye and that term is fitting. One son described watching his father slip into forgetfulness as losing him by inches. A wife depicted her husbands progression into the depths of dementia by saying; "It's as if someone stole my husband but forgot to take his body."

There comes a time in this disease when placement is the best choice for the person with the disease and for the one's who love that person. Someone who does not know about dementia might not believe that, but those who have lived the experience will understand. The fact that it is difficult is clear. In general most people do not want to leave their homes and their loved ones do not want to force the issue. Home is where everyone feels safe. Part of feeling safe comes from believing that the people you live with know and accept you. Being with people who share a history is comforting. As the disease progresses the person with dementia may no longer recognizes the physical structure of his home. Even if he has lived in the same house for 30 years it may begin to look unfamiliar. However, the person with dementia will recognize the home of the heart. Fortunately, this feeling and the sense of security that it brings can be replicated in a specialized Alzheimer's Care Program.

Here the person can continue to engage in meaningful activities that bring pleasure and satisfaction at a level designed to meet his cognitive abilities. He can socialize with other people of his same cohort group. Even though the other residents may have been strangers a few months ago they have shared similar life experiences by virtue of their age association. But most importantly they share a common bound that cannot be found elsewhere. You see they can relate to one another on equal terms. Persons with dementia often intuitively sense that their child has assumed the role of parent and that is not such a comforting feeling for either the person with the disease or the adult child.

Caring for a loved one with significant memory impairment can be overly demanding for even the most devoted of family members. The biggest toll though may not be the lack of sleep but the change in the parent child relationship. Once a person moves into a specialized program the adult child is encouraged to visit as she would have visited dad prior to placement. Generally, it takes several weeks for a person with dementia to adjust to a new home but after that you may be surprised to see him engaged in pastimes that you never knew he enjoyed. Staff members work in shifts so they are awake when he is awake, even if that is at 3 a.m. Staff members know how to encourage the person to do as much for himself, for as long as possible, to avoid excess disability. Excess disability can occur when people begin to do for the person instead of with the person. This includes dressing and bathing which are tasks that the person with dementia may still be able to do if we modify the steps to meet his ability. This is no small job as it requires the caregiver to take a slow pace but the sense of self-esteem that a person with dementia feels from maintaining independence is priceless.

There are two types of dementia special care units. One is referred to as an Assisted Living Facility or ALF. This type of environment may or may not have registered nurses but will provide meals, assistance with personal care needs, engagement in meaningful activities and supervision. The other type of environment is called a Skilled Nursing Facility or SNF. It is similar to the ALF but is cable of providing a higher degree of medical care. Many SNF's qualify for the state Medicaid program. This means that funds may be available to maintain your loved one even if his finances are exhausted.

To decide which type of new home is best for your loved one visit several. Sit in the main area and observe the mood of the persons living there. Do they look happy? Is someone engaging them in interesting activities? This is more important then the physical plant structure. It's feeling part of a group that makes a place a home. Does the staff seem friendly? Ask staff if they like working there? If yes, ask them what in particular do they like about it? Don't call before you tour, there really is no need. Pop in and soak up the atmosphere. You will know which new home is right for your loved one.

The Homestead Program at Genesis HealthCare provides both ALF and SNF environments and would welcome your visit. If you should select one of these programs then their Homestead Director would meet with you to do an in-depth assessment to first ensure that the fit is right then to develop an individualized transition plan. Most programs offer family support groups to help loved ones adjust during this difficult time. Once your person moves in, you will be encouraged to remain an active care partner. After all, know one knows him better.