But I Promised I Wouldn’t Put her in a Nursing Home
Click Here to Read Magic’s to “My Dad Doesn’t Recognize Me – Is It Still Worth Visiting?”
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 a no-cost 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
Senior Living Now and in 2028
Maria lived in a colonial-style townhome with 14 stairs up from the basement, and 14 more to her bedroom. It was wearing on her joints to go up and down all those steps. She was also beginning to feel lonely and isolated, since most of her friends had moved out of the neighborhood. After giving it a lot of thought, she moved to a senior living community, and is much happier. She swims daily, is involved in various committees, takes art classes, and loves all of the options she is presented with. For Maria, her new living situation has truly enhanced her happiness and quality of life.
Maria was lucky to find a housing option that meets the needs of her active lifestyle. For many of us, since there is a maze of senior care options currently available, it may be more difficult to find the right fit.
You’ve probably heard various senior housing and care terms — “Senior Living,” “Independent Living”, “Assisted Living”, “Nursing Home” — but you might not be completely clear about what, exactly, they mean or how they differ from each other. Below are descriptions of different housing and care options available to seniors today. Later in this article, we will look at what’s projected for senior care and housing in the future:
In-Home Care: When it comes to in-home care, there are two different broad types of services provides: assistance with ADLs (Activities of Daily Living) and assistance with IADLs (Instrumental Activities of Daily Living). Assistance with ADLs means help with bathing, dressing, toileting, incontinence care, and transferring (moving from bed to chair and back). Assistance with IADLs includes things such as transportation and errands, light housekeeping and laundry, meal planning and preparation, and medication reminders. A newer trend is to combine hands-on care from a professional caregiver with smart home technologies. The cost of in-home care ranges from $10 an hour up to $40 an hour, with the average being $20/hr – $24/hr in the Northern Virginia and DC metro area.
Senior Living Communities: Senior living community are typically for adults 55 and older who are simply looking for a lifestyle free from the noise of children and the worries of maintaining a household. These are typically rental community, with a variety of living options, such as apartments, townhouses, cottages, and even single-family home. These communities may have a shared clubhouse, swimming pool, or golf course, but typically no additional services beyond what you would find in a typical rental community.
Independent Living Communities: Independent living typically describes senior housing for residents who are usually ages 62 or older. Independent living communities focus on active living, offering lifestyles free from the worries of home maintenance and repairs. Services and amenities may include life enrichment programs, wellness opportunities, transportation options, trash removal, maintenance, and repairs. Some communities offer additional à la carte amenities such as housekeeping, meals, concierge services and laundry. The average cost of independent living varies. In rental communities with few benefits and services, monthly rental prices may be comparable to conventional apartments. Add more services and amenities, and costs rise.
Assisted Living Communities: These communities are a popular option for adults who need a little extra help with the tasks of daily living. Seniors who choose an assisted living community are able to maintain some sense of independence in a private apartment while having around-the-clock support from nearby caregivers. The most commonly needed services in an assisted living community are medication reminders and personal care (bathing, grooming, dressing). Housekeeping, meals, laundry and life enrichment programs are also included. Some form of transportation service is usually offered. In 2018, the average cost of assisted living in the Metro DC area is around $6,000 – $8,000/mo. This is one of the highest rates in the nation and is well above the national average rate of $3,650/month.
Memory Care: Memory care refers to dementia-care programs offering specially trained caregivers and a physical environment that supports safety and success of people with Alzheimer’s or other types of memory loss. Memory care programs are typically found inside of assisted living communities, but more and more are being developed inside of skilled nursing facilities. In addition to assistance with personal care, medication management, housekeeping, and laundry, residents in a memory care residence benefit from dementia-specific features, usually including specialty dining services and life enrichment activities.
Continuing Care Retirement Communities or Life Plan Communities: A CCRC, or life plan community, is home to a full continuum of senior care. That means it’s an integrated model that usually includes independent living, assisted living, memory care inside the assisted-living portion of the community, and skilled nursing, with a pricing structure that allows discounts on a range of services for those who enter the community as independent living residents. Many CCRCs also offer home care and hospice services.
There are many downsides to CCRCs, however. Some communities require hefty entrance fees, but promise to try to care for residents even if they run out of money. Others have no entrance fees, but higher monthly fees. Some CCRCs have run into financial troubles, make them risky. Please see our blog post —Another Continuing Care Retirement Community Bites the Dust? — from last week for details on a recent situation, and links to other posts about CCRCs. Families are strongly advised to review CCRC contracts carefully, ask a lot of questions, and meet with an attorney before providing any financial information to the CCRC, and certainly before signing any contract documents.
See our article, Non-Traditional Living Options for Seniors, for other options, such as villages, co-housing, NORCs, and niche communities.
So, now we know what’s available for senior housing today. But, what does the future have in store?
The Future of Senior Housing
Significant changes are coming as we move out of the World War II generation to the baby boomer generation. “Boomers have higher expectations as consumers and a history of having those expectations met,” according to Steve Maag, Director of Residential Communities at LeadingAge, a national association dedicated to advocacy, education and research on aging.
Keeping that in mind, A Place for Mom recently made projections about the future of senior living communities and technology. Here are some significant changes they believe you’ll see by 2028 and beyond:
Boomers demanding more: Customers of the past were more likely to accept the status quo when it came to housing, and weren’t as demanding. Customers of the future will push for more. Retirement and senior living communities will have to respond to consumer demand by providing a greater variety of services that include:
- Dining options and restaurant-menu meal variety with gluten-free, vegetarian and more culturally diverse foods;
- more lifestyle and wellness programs;
- better apartment fixtures, designs, and furnishings; and
- more ways to pay.
Better Technology: Technological advances will enable seniors to live healthier, richer lives.
- Advances in telehealth will break down transportation barriers for older adults, mitigate health care costs such as emergency room visits, and help older adults remain in their homes longer.
- Senior-focused computer systems will help keep long-term care residents happy and engaged, says Tom Bang, CEO of It’s Never 2 Late, a Colorado company that’s developed a picture-based, touchscreen computer interface system and installed the intuitive technology at approximately 2,300 senior living communities in the United States.
- More advanced sensing technology will also play a part in tracking heart rates and other vital signs.
Family Caregiving will change: In the future, family members will likely be less available to provide caregiving for aging loved ones.
- More women will likely remain in the labor force longer, restricting their family caregiving roles;
- There will be a much larger childless population of older adults;
- Divorce will disrupt family support networks among middle-aged and older people.
- The decline in family caregivers will put more pressure on formal care providers.
More Cost Transparency: More and more, senior living consumers will expect to obtain pricing information online as a critical part of their search and decision process.
Boomers may move into senior housing earlier than previously: Older adult communities of the future will trend toward becoming more attractive to boomers who’ve reached their late 60s or early 70s, and want to move into senior communities while they’re still healthy enough to enjoy the amenities.
When More Care is Needed
Now, and in the future, most seniors will want to stay in their home for as long as possible. However, if a loved one cannot live independently (even with the help of technology) and he or she is showing signs that living alone is a strain, it may be time to consider other alternatives.
Whether the outcome is in-home care, assisted living, or nursing home care in the future, it is always wise to work with an experienced Elder Law Attorney such as myself. Life Care Planning and Medicaid Asset Protection is the process of protecting assets from having to be spent down in connection with entry into assisted living or nursing home care, while also helping ensure that you and your loved ones get the best possible care and maintain the highest possible quality of life, whether at home, in an assisted living facility, or in a nursing home. As always, please contact us at any time for a no-cost initial consultation:
Fairfax Elder Law Attorney: 703-691-1888
Fredericksburg Elder Law Attorney: 540-479-143
Rockville Elder Law Attorney: 301-519-8041
DC Elder Law Attorney: 202-587-2797