At some point all caregivers must decide how best to provide long-term care for their loved ones with Alzheimer's disease (AD). Many caregivers provide this care by themselves at home even when their loved ones with AD need 24/7 continuous care and attention. When caregivers feel the need for some respite time, many find that time by placing loved ones in social day care programs for several hours a day for one or more days each week. Many caregivers also rely upon other family members or friends to occasionally help them at home or provide some respite.
There are alternatives to caregiver-provided long term care at home, but all require either long term health care insurance policies or caregivers having the financial ability to pay for such options, unless one's income level will qualify them for Medicaid assistance.
Caregivers can hire part- or full-time home health aides or private nurses to come to their home to provide 24/7 care. Another option is placement of a loved one in a dementia unit in an assisted living facility. A nursing home is a third option if a loved one requires full-time medical supervision or needs maximum assistance with "activities of daily living" (eating, bathing, dressing, toileting, and mobility). Hospice, which provides only palliative care, is a fourth option but only if a doctor certifies that death is probable within six months.
Aside from the considerable financial resources needed, there are advantages and disadvantages associated with all choices, and many factors to consider before making a decision. Since no one can accurately predict when a loved one's decline with AD may accelerate to the point of needing 24/7 continuous care, whenever possible caregivers should investigate options while loved ones are still in early stages. Well-meaning relatives, friends, social workers and other health professionals may offer differing opinions regarding which option is best for the caregiver. However, as we used to say in my weekly spouse support group, whatever decisions the caregiver makes are the right decisions because only the caregiver really knows what it is like living 24/7 with a loved one with AD, and it is the caregiver whose life will be most affected by such decisions.
Some caregivers and loved ones have discussed personal preferences for long term care prior to an AD diagnosis. If no such discussions were ever held and a loved one is no longer capable of helping to make such decisions, then the caregiver must make decisions based upon other factors. For example, some caregivers or loved ones are okay with home health aides during daytime and evening hours, but some are not. Some are comfortable with aides sleeping in their homes at night, but some are not. Caregivers may also discover that the monthly cost for 24/7 home health aides may exceed the monthly cost of an assisted living placement.
If one chooses to provide care at home, with or without aides, there may be a need for home renovations. One may have to remove floor saddle sashes to facilitate movement from room to room, widen doorways to accommodate wheelchairs, remodel bathrooms to provide easier access to a toilet, shower, or bathtub, or install ramps by front or rear doors. If caregivers hire 24/7 home health aides, they may need to provide a setting where the loved one's bed and the aide's bed are in the same room, or close to a bathroom. If such a setting does not already exist, home renovations may be needed before aides can stay overnight.
The presence or absence of a long term health care policy, and just what kind of in-home or facility assistance that policy will pay for, may be a determining factor in making decisions about how to care for loved ones. If there is no such policy and one does not have the personal financial resources to pay for either 24/7 home health aides or an assisted living placement, caregivers must check to see if Medicaid will pay for or reimburse some or all costs for in-home aides or residential placement. Medicaid is a state program and income eligibility provisions vary from state to state.
If one chooses outside placement for a loved one and the caregiver plans to visit frequently, thought must be given to transportation. Is the placement within a reasonable driving distance for the frequency of visits you plan to make? Is there public transportation available if you are no longer able or willing to drive? Are friends or family members living nearby who can drive you back and forth? If caregivers will need to rely upon taxi services, those expenses must be considered.
Where one provides care for a loved one with AD is a highly personal decision for each caregiver, dependent upon many factors. Absent previous discussions with loved ones, all caregivers can do is make a decision that they think meets the needs of their loved ones and their own needs as best they can, and move forward.
If you would like me to respond to questions or comments about this article, please email me directly at acvann@optonline.net. All of my columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann. You can learn more about my journey with Alzheimer's and read my articles published in caregiver magazines, medical journals, and in major newspapers at www.allansvann.blogspot.com.
My next blog post will be in two weeks. Tentative title... "Alzheimer's Residents in Assisted Living Facilities."