Q. My aging mother has lived in her home since I was a child. My family loved the neighborhood so much that we never moved, and when I got married and had my own family, we bought a house a few blocks away. Now, dad’s been gone for many years, and mom has had home health care for the last several years, along with me acting as her primary caregiver. But now, mom’s dementia has gotten worse to the point where she’ll likely need nursing care in the not-so-distant future for her physical ailments and mental decline.
In my opinion, a bed in a facility with 24-hour supervision would ensure greater safety for her — but at the same time — less freedom for her and more guilt for me. My wife, siblings, and most of mom’s close friends agree with my assessment of the situation. When I spoke with my mother about this, she also seemed to be accepting of the situation. Right now, I am feeling a mix of relief and sadness, and am having trouble overcoming the emotions involved with this move. It’s hard to accept mom moving out of the family home and into a nursing home, and it’s also hard to relinquish my caregiving role and admit failure. Do you have any suggestions?
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A. Many family caregivers become emotional over nursing home placement. Some regard it as a failure to care for a loved one, while others see it as the ultimate loving and responsible act when safety becomes paramount. Some hold both views and feel powerfully conflicted.
A five-year study explored the effect of long-term care placement on 180 family caregivers (Schulz et al., 2004). Family caregivers were assessed both before and after their relative was placed in a long-term care facility to determine the impact of this transition on the caregivers. Despite the anxiety, stress, and negative perceptions of the situation that many of them had beforehand, the following occurred for the majority of the caregivers:
● Involvement with Loved Ones: Caregiving family members remained highly involved with their relatives following admission to a long-term care facility. Following placement, about half of spousal caregivers visited daily and an additional 45% reported at least weekly visits. Among non-spousal family caregivers, a quarter visited daily and an additional two-thirds report weekly visits.
● Performing Caregiving Tasks: The majority of caregivers who visited their relatives on a regular basis performed tasks similar to those carried out when the care recipient was living at home, such as managing money, arranging medical care and transportation, and providing social support. More than 50% of both spousal and non-spousal caregivers report participating in the physical care of the resident. In addition to visiting and participating in care following placement, family caregivers took on new tasks such as interacting with administration and staff of the facility as the advocate for their loved ones.
● Anxiety/Stress Relief: Family caregivers continued to experience some stress (but to a lesser degree than before), despite favorable impressions of the care their family member was receiving and an improvement in their own social life.
How to Deal with the Stress and Anxiety
Most caregivers feel it’s a privilege to care for their loved one, and don’t necessarily want to be relieved of the job of providing the care, even if it’s physically and emotionally draining, but often it’s inevitable. Acknowledging the possible mix of emotions including grief, loss, guilt, and relief, may allow for a healthier adjustment after nursing home placement of a loved one.
Here are thoughts for dealing with the many emotions that arise around this difficult family decision:
● Try looking at the situation differently: Rather than focusing on “your failure as a caregiver,” understand that sometimes professional care is necessary for the safety or comfort of your loved one and/or for you to have some life apart from caregiving.
● Acknowledge that you’re coping with a significant adjustment: While this doesn’t change the situation, it can help to give yourself permission to pause and understand the challenge you’re facing.
● Practice letting go: If your loved one is being well cared for, do what you can for your loved one, and then move forward with your own life.
● Reassure yourself that your job is to provide the right care: The “right” plan should meet a parent’s needs now and in the future, while taking into account the needs and capabilities of other family members. If the care that best meets that formula is nursing home placement, then that is the prudent choice for everyone.
● Help your loved one adjust to the facility: Work together to identify meaningful activities and routines for her to help facilitate the adjustment.
● Find little, and perhaps new, ways to express your care and love. Maybe you can bring the newspaper, pictures of your kids, or flowers to your mom to brighten up her room.
● Know that caregiving changes but continues: You may no longer need to administer your mother’s medication or cook her meals, but you can still make sure her nursing home room is clean, her nurse’s aides are responsive to her, and that she is reasonably content. You can still help your mother live as fully and safely as possible as she ages.
Medicaid Complexity in Virginia and other States
Nursing homes in the metro DC area cost between $10,000 – $12,000 a month. This amount is catastrophic for most of us. The Medicaid program is our country’s largest health and long-term care benefits program, covering one in six Americans, including 70% of nursing home residents and 20% of persons under age 65 with chronic disabilities. Unfortunately, Medicaid laws are the most complex and confusing laws in existence, and impossible to understand without highly experienced legal assistance. Without proper planning and legal advice from an experienced Elder Law attorney, such as myself, many people spend much more than they should on long-term care, and unnecessarily jeopardize their future care and well-being, as well as the security of their family. Please read the Medicaid Complexity page on our Website for more details.
Medicaid Planning in Virginia and other States.
Medicaid planning can be started while you are still able to make legal and financial decisions, or can be initiated by an adult child acting as agent under a properly-drafted Power of Attorney, even if you are already in a nursing home or receiving other long-term care. In fact, the majority of our Life Care Planning and Medicaid Asset Protection clients come to us when nursing home care is already in place or is imminent.
To protect your family’s hard-earned assets from the disastrous costs of nursing homes in our area, the best time to create your own long-term care strategy is NOW. Generally, the earlier someone plans for long-term care needs, the better. But it is never too late to begin the process of Long-term Care Planning, also called Lifecare Planning and Medicaid Asset Protection Planning.
If you have a family member nearing the need for long-term care or already getting long-term care or if you have not done Long-Term Care Planning, Estate Planning, or Incapacity Planning (or had your Planning documents reviewed in the past several years), please call us to make an appointment for a consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797