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  • Writer's pictureKatya De Luisa

Life Sentence

When a person with dementia is eventually placed in an eldercare facility, the expectation is they will reside there until the end of their life; a life sentence.

Several years ago, I was privately contracted as an advocate for one resident with dementia at a facility. It was lunchtime, and several ladies were seated together every meal. My lady was one of them. One of the women paused while eating. She seemed to become distracted by her blouse. It was a short sleeve T-shirt with broad black and white stripes.

She pulled at the front, checking it out like it was her first time seeing it, then announced, “This thing makes me look like a prisoner!”

Rosemary, a grumpy lady who never smiled, was sitting across from her. Her fork stopped mid-air; she looked over the top of her glasses at the woman’s shirt and replied sarcastically, “Don’t you know we are all prisoners here?” She then resumed eating with barely a pause as though nothing had transpired.

The challenges of caring for someone with dementia can be more than many families can take on. There are numerous factors complicating care at home, especially in advanced stages. The excessive financial burden, the overwhelming 24/7 care, or the caregiver is an aging spouse without the stamina required. In the past, families took on the care of their elders. However, today, most family members have to work. If the older person does not have their own income sufficient to cover the expenses, often the family can’t afford the financial burden of not working or contracting home care.

However, home care versus placement in a facility is not the focus of this article. The environment of the elderly care institution where the elderly spends their last years concerns me. The reality is most eldercare facilities are institutions, especially the larger ones. No matter how expensive or luxurious they seem, most continue to follow the model of a psychiatric hospital.

The first house for the poor was built in New England in 1660, housing the homeless, the mentally ill, orphans, and the elderly poor. At this time, senility was considered a mental illness. This was the final fate of those who aged without family or whose families were too poor to care for them.

In 1752 the Quakers in Philadelphia created the first psychiatric hospital, which was an update from the poor house, but not much. The "senile" elders usually ended up there.

FDR enacted the social security law in 1936, and by 1940 seniors were collecting monthly benefits. However, these benefits did not apply to caring for the elderly in public institutions. Without government funding, many of these places closed. The occupants were sent to "Residences," where they did qualify for assistance. Eventually, these group homes grew in size and became more institutionalized, again resembling the psychiatric hospital model.

Today's eldercare is big business, and the larger facilities are usually owned by multimillion-dollar corporations. Typically, these places resemble expensive hotels, with a reception area, art-decorated walls, and dining rooms that give the impression of an upscale restaurant; some even provide menus. The hotel-style rooms have televisions and individual baths, and every brochure or website features wonderful activities your loved one can participate in.

However, despite the publicity hype, like the hospital model, most places have rooms running along long corridors with monotone-colored walls and activity programs designed for groups without one-on-one interaction with those that can't participate, like those with dementia.

Because of the high volume of residents to care for, there are commonly staff shortages, and care is limited to only the basic physical requirements. Unfortunately, many bigger facilities have financial hiring incentives, creating a revolving door of staff turnover. Constantly changing care personnel limits familiarity between staff and residents. In some places, the emotional bonding of the staff and resident is frowned upon by management.

Like prison, doors are locked, usually with alarms, visiting times are strict and unauthorized visitors aren’t allowed in most. During COVID, even families were restricted from visiting their loved ones. Many visited from the other side of a glass window. Like in the psychiatric hospital, a nurse dispenses medication, the doctor visits sporadically, the diet is a group menu, and routines are strict and seldom vary. I’ve encountered some places continuously playing elevator-type background music, reminding me of the movie One Flew over the Cuckoo's Nest. Worse yet, the monthly fees can reach $6,000 or over.

There is a viral story of an older woman who decided to forego the nursing home and live on a cruise ship. She had her own luxurious cabin and an onboard medical team, received first-class attention from the staff, the food was fabulous, the activities were Las Vegas-style, and she could travel. The cost was about the same, and she was free to move about or get off the ship when she wanted.

Logically not all facilities fit what’s pictured in this article. I wouldn't mind being in the smaller group homes of 15-25 residents, where there is often less staff turnover and more of a family environment. Unfortunately, these homes are few due to rising insurance costs and corporation buyouts. Also, they usually have long waiting lists.

To be cared about is what the elderly actually craves. Outer luxury isn’t as important as how people emotionally interact with us.

Everyone wants to feel safe and important to someone and have their physical and emotional needs attended to in a caring way. I have visited Indigenous families living in poverty yet caring for their elderly with such love that it was apparent the elderly person was happy despite their surroundings.

If it is necessary to place your loved one in a facility, it is up to you and the family to provide the emotional support the facility seldom provides. You must be proactive in ensuring your loved one receives the care the facility has claimed to provide. After a year of working as an advocate, I can attest that many don’t.

Try to visit them frequently and at unexpected times, take them on outings if and when possible, bring small gifts each visit, and call them on the phone regularly. Visit with the grandchildren and, if allowed, bring your pets too.

Even if they have dementia and forget who you are, they will never forget how you make them feel. It’s up to you.

Katya De Luisa is a freelance writer, author, dementia educator, and coach.

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