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Q. I remember the moment like it was yesterday. My mom, who had Parkinson’s for ten years at the time, was sitting at my kitchen table. I saw how challenging it was for her to get her wheelchair from the living room into the kitchen, to chew and swallow her food, and to even speak. I had to hold back tears, as I often do when I see her struggling.
I am not a great cook, so I jokingly compared my attempt at a more complicated breakfast that day to hospital food. Although, my intent at the time was self-deprecating humor, the mention of a hospital made my mother unhappy, as she really disliked being in the hospital, and preferred to be at home. I found myself making a promise to her that no matter what, I would never put her in a nursing home.
Ten years later, my mom’s Parkinson’s is worse, and now she has Lewy Body Dementia also. She is sometimes delusional. She forgets she can’t walk, and tries to get out of bed and falls. The ambulance came last week to help me lift her off the ground after a fall. I love and care about my mom, and wish I could keep my promise to her, but maybe I can’t. Maybe nursing home care is what’s best, but then how do I cope with the guilt of breaking my promise to her?
I am sure you’ve had this conversation with others in a similar situation. Any advice you can give? This situation is incredibly stressful and overwhelmingly difficult for me. My mom’s doctors and all of her friends and my doctors and my family all say that I need to put her in a nursing home, but I just don’t know if I can do it. Thanks so much for any guidance you can provide.
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A. Thank you for sharing your situation and for reaching out to us. As you likely know from other situations in your life, sometimes, no matter how many promises you make, the decision is eventually taken out of your hands. We all try to do our best, but sometimes we can’t keep these types of promises, no matter how well-meaning we are.
Thinking back to a couple of generations ago, families were more likely to care for their parents at home. This was ideal because people didn’t live as long. However, today, thanks to modern medicine, those with dementia and many other chronic diseases can live many years past their diagnoses. Yes, they are living longer. But, caring for them at home becomes increasingly difficult as cognition and self-care skills worsen. Safety and health of the patient and of other family members also becomes a factor.
You seem to realize that your mother needs more care than you can provide. But, what about that promise you made to her that you won’t put her in a nursing home?
Making a Promise You Can’t Keep
As you know, your mother may get to the point of not being able to remember the promise you made her. In fact, she may have already passed that point. However, as her daughter and caregiver, you obviously won’t forget.
Oftentimes, people feel duty-bound in these situations to do what they said they would do. But at the time they made the promise, they did not have all the facts and they had no idea what they were actual signing up for. “The feeling of being unable to keep the promise adds to the stress of placing someone in a facility, says Gary Small, director of the Division of Geriatric Psychology at UCLA’s School of Medicine. “It’s always best to not make promises you can’t keep or qualify,” he said. Don’t despair, though. In your situation, if the topic comes up with your mother and if she still is able to have a meaningful conversation, you could say something like, “Look, Mom, I know you want to stay in your home, and I’ve done everything possible to make that happen all these years, but things have changed now, things that we never anticipated 10 years ago, including the fact that my own health is suffering which makes it much harder for me to take care of you at home.”
Dealing with Feelings of Guilt
Whether you made a promise to your loved one or not, guilty feelings and worry are a normal response when we’ve been caring for someone on our own and nursing home care is needed. According to AgingCare.com, if you are struggling with a decision to place your loved one in a care facility, here’s how to deal with feelings of guilt:
1. 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.
2. Learn to understand that you can only help them so much. Total control of events isn’t in your hands, either. Do your best, and then try to let go when appropriate.
3. Realize that you didn’t cause your loved one’s illness or illnesses. He or she would continue to suffer from them whether you were the sole caregiver or there is outside help.
4. Know that few aging parents or spouses would want their loved ones to entirely give up living any kind of life apart from their needs. Try to remember that concept when you feel guilty about hiring outside help or placing a loved one in a nursing home.
5. Remember that you will still be part of the care team. You will still be your loved one’s most important advocate. Do what you can for your loved one, and then move forward with your own life. You’ll have more to bring to all of your relationships, and that benefits everyone.
Not Putting a Loved One in a Nursing Home When Needed Can Lead to Neglect
Ironically, the promise not to put a loved one in a nursing home when needed has led to significant amounts of abuse and neglect, often unintended. You think you are doing the right thing by keeping your loved one at home, but they may actually be worse off if you aren’t equipped or able to care for them properly at home.
Elder neglect, or failure to fulfill a caregiving obligation, constitutes more than half of all reported cases of elder abuse. It can be intentional or unintentional, based on factors such as ignorance or denial that a loved one needs as much care as he or she does.
In addition, the responsibilities and demands of caregiving, which escalate as your loved one’s condition deteriorates, can also be extremely stressful. The stress of elder care can lead to mental and physical health problems that make caregivers burnt out, impatient, and more susceptible to neglecting or lashing out at the elders in their care.
The following are signs of neglect. Again, neglect is often unintentional, resulting from an overburdened or untrained caregiver.
· Dirty clothes
· Soiled diapers
· Bedsores
· Unusual weight loss
· A home that’s unusually messy — especially if it wasn’t before
· Lack of needed medical aids, such as hearing aid, cane, glasses
In addition to the signs of neglect on this list, if the elder is disabled, especially cognitively disabled, and needs help taking medication or getting dressed, it can be considered neglect if their caregiver is not providing assistance.
Closing Words of Advice from a Farr Law Firm Staff Person Who has Been There
“We all have an aversion to placing a loved one in a nursing facility. However, in the long run it will be the safest option for your mom and the most loving thing you can do for the whole family. I have personally experienced the physical exhaustion and caregiver burnout resulting from long nights and being pulled in multiple directions. In the end, I regretted who I became because I had tried to do it all myself. I didn’t have time to take care of my daughter, my house or myself. I was very resentful. Rest assured you are doing the right thing. You have multiple responsibilities; arranging for your mother’s health care and a safe place to live is not the equivalent of abandoning her.”
Planning for Nursing Home Care
When you come to terms with the fact that nursing home care is right for your mother, a big concern for most of us is the affordability of nursing home care. This is a legitimate concern, as nursing homes in the Metro DC Area cost $10,000-14,000 a month. To protect your family’s hard-earned money and assets from these catastrophic costs, there is no time like the present to begin Medicaid Asset Protection Planning. Please call us to make an appointment for an initial consultation:
Fairfax Elder Law Attorney: 703-691-1888
Fredericksburg Elder Law Attorney: 540-479-1435
Rockville Elder Law Attorney: 301-519-8041
DC Elder Law Attorney: 202-587-2797
About Renee Eder
