26 July 2010|
Very few people in the early stages of memory loss (generically called dementia) will recognize their need for assistance with personal care and other activities. Most people with memory impairment will not be the ones initiating a move to assisted living or nursing home facilities. It is the family of the person with memory impairment who will recognize the need to move, find a place and make the final decisions.
There are no major signs that will tell you that “this is the right time” to make such a move. Generally, it is brought to a head in a crisis, and that is when it leaves less choices as to the setting of assisted living, be it home with home care workers, an “assisted living” facility (for which there is no legal definition of what an assisted living facility is) or a nursing home. The reasons family decide to move their family member with memory impairment are:
1. The person with memory loss is no longer safe in his or her current residence.
2. Emergency and crisis situations have arisen.
3. Family members are not able to provide the necessary level of care due to other family circumstances or geographic distances.
4. The current level of supervision and assistance is too great for a family member to provide or is too difficult to manage and supervise others to do.
Finances play a major role here as well. Most people in the USA will not be able to afford private home health services or private assisted living facilities because of the high monthly costs. Thus, for more than the majority of Americans, nursing homes are the only choice.
Nursing homes are the only setting in most of the USA that are paid for by public assistance programs under Medicaid. Medicaid, unlike Medicare, is a means tested and medically tested program, meaning that one must qualify financially as well as medically to receive nursing home care paid for by Medicaid. Also, since Medicaid is a State and Federal program, the 50 United States are really 50 separate countries in terms of eligibility for Medicaid.
Some states have implemented Medicaid ‘waiver’ programs. This waiver allows the State to use funds for nursing home care to provide some other care, such as home care, and to a limited extent in some states, assisted living facilities. Problem is the home care benefits under this program are NOT 24 hour a day services, and the few assisted living facilities that are participating in these programs do not receive adequate reimbursement from the State, and so most operators may only have a limited number of rooms available to a Medicaid beneficiary. Some states will use this waiver program to employ family members to take care of a family member.
There are many psychological and social obstacles to moving to a residential care facility. One is media depictions of long term care, and the abuses that have occurred. Others, including the wedding vows that include “in sickness and in health, ‘til death do us part.” Many spouses feel guilty and that they have violated their vows by not taking care of their spouse at home, and this can lead to other programs of self neglect, abuse and possible financial elder abuse or exploitation.
Children sometimes have the notion that “that my mother cared for me, now it is my turn”. Raising children and caring for someone with dementia are not equivalent, and, again, can lead to neglect, abuse or exploitation of a demented family member.
Family and friends may criticize and reinforce guilt and pain with their ignorance of care giving or the special medical and psychiatric issues of caring for someone with dementia. Many times those outside of the direct care giving may be having difficulties themselves with accepting dementia and the declining health of their friend or family member.
As you consider this difficult decision keep this in mind:
1. You are not alone. This is one of the hardest decisions to be made.
2. There are no clear rights and wrongs when it comes to caring for someone.
3. Caregiving does not end once you place a family member in a facility.
4. Your adjustments to this decision is just as difficult as your family member’s adjustments, and theirs can be harder the farther along their diseases have progressed.
While it is often true, that no one can care for your family member as well as you can, if you don’t get your rest, take vacations (called respite) and otherwise get others to help you, you will not live long enough to care for your family member in a facility or at home.
This is why it is important to have an objective, fee only, advocate and advisor to help you sort and decide on the proper course of actions. Providers of home care services, and nursing home, assisted living facilities and others are not objective and may cause you to overlook very important details that need to be considered in this difficult decision.