YOU WANT WHAT?

YOU WANT WHAT’S BEST! WHAT DOES THAT LOOK LIKE?

BY GRETCHEN HOOK, OWNER, LITTLE ELM RESIDENTIAL CARE HOME

Disclaimer: I am not a medical doctor. This article shares insights from my experience working with families and loved ones to help them choose the best options for those who need assistance.

As the owner and operator of a residential care home, I receive several referrals to place individuals with dementia in my home. I have a policy that these individuals must have managed behaviors because my home is also my residence, where my husband and I live. I genuinely love what I do and strive to maintain a peaceful, calm environment not only for myself but also for my patients. That being said, I invite those with dementia, as I find they can have a very fulfilling life in this peaceful place.

Over the past few weeks, I have received several referrals to care for their mom or husband in my home. All these individuals have dementia at different stages. All but one exhibited severe behavior, and they all experienced something called “sundowners.” I’ll talk more about sundowners later. I have a policy of assessing each patient individually and often request time with just the patient to see if they would be a good fit in my home. What I frequently find is that the dementia patient needs a memory care unit designed to meet their needs. These memory care units are locked for the patients’ safety. They often resemble a home and usually offer activities tailored for patients with dementia. Each memory care unit is unique and cares for patients in its own way.

After my thorough assessment, I will discuss my findings with the family members who are seeking placement. What I hear from these family members is, “I don’t want to place mom there because the other residents are not like my mother,” or “they (facility) do not have activities my husband would like.” While these are legitimate concerns, I cannot accommodate such behaviors due to the peaceful nature of my home, and the facilities are designed to manage them. Behaviors like sundowners, which is defined as “a syndrome, also known as sundowning, is a condition characterized by increased confusion, agitation, and mood changes that occur in individuals with dementia during the late afternoon and evening hours. Symptoms include restlessness, irritability, anxiety, and sometimes paranoia, hallucinations, or delusions. The causes are not fully understood but are linked to factors like lower light levels, fatigue, and disruptions in the body's internal clock.” Sometimes, sundowners occur in the mornings as well. Often, the patient will also exit-seek, become violent, or yell. Memory care facilities are best equipped to manage these behaviors and assist the patient.

I will offer my services to help find placements for these patients, but I often encounter resistance from the seeking family members because they want their loved ones with me, where they can find peace and comfort in a home environment. While I share that desire, it’s not feasible to have these patients in my home. I must respect the family’s decision to place or not to place their loved one in a memory care facility. Often, when the decision is not to place, families become frustrated and overwhelmed and tend to make poor emotional judgments about their loved one’s care. I understand that a larger facility may not be the preferred choice, and I empathize. However, as a family member, I might suggest setting aside our own desires for a moment, considering what is truly best for our loved one right now. How can we best serve their needs? Dementia is a terribly unfair disease that takes our loved ones away from us. We long for the days before the diagnosis and often still refer to them as if they were the way they used to be. This brings me to my final point.

There are different types and subtypes of dementia. My advice is to learn as much as possible about the specific dementia your loved one has—what symptoms might develop or what symptoms they are already showing. Many resources are available in book form, such as “The Itty-Bitty Dementia Book” and “The 36-Hour Day.” I have no financial ties to these books; I recommend them to families, and now to you. I aim to educate and support families as they navigate this complex disease, helping them find placement and other community resources. If you're having trouble finding answers for your loved one, it might be helpful to look inward and accept what is happening. We want to hold onto what was and grieve what is to come. It’s okay to mourn the loss of our loved one while they are still alive, but we must accept that they are no longer the same and require a different kind of care. I hope this article helps you to find peace, resources, and some semblance of normalcy. Other services that can guide families with these difficult decisions include end-of-life doulas, Hospice care, palliative care, geriatric doctors, neurologists, and social workers.