'Tis The Season: Family or Facility, Always Trade Offs, Often Incidents

We used to spend holidays with extended family at our home. We provided all the food, the drink and everyone came ready to enjoy and imbibe.

Back then, it was three days in a row “shared” with husband’s family because it was “traditional” to spend Christmas Eve, Christmas Day and a few days before to celebrate his youngest brother’s holiday birthday – all together, the same people.

I understand now and I understood then. My husband’s brother was born with Downs Syndrome and when he was younger, Christmas was a very big deal and so was his birthday. As he grew considerably older, though, and we had children and friends and other family, we would have liked to have had “our time” as well as “family time”.

We would have welcomed another day, perhaps before or maybe after by several days, Christmas day, but the added stress of getting everything ready, including the major holiday feast and all that entails, was not always a joyful sound within our family.

Looking backward, I did a great deal of accommodating, of living life as others wanted.

We arrived at Mom’s old facility to share the main meal, Lunch, on Christmas Day with two women in their mid sixties whose medical conditions and daily needs have placed them in these rooms and hallways long before what would normally be considered “their time”.

One of the women, newer to the facility, wasn’t waiting in the dining area or the lobby when we arrived, daughter and I. Told she’d returned to her room upset and deciding not to join the dining, I hoped maybe by going to visit her room I could bring her back down to main dining.

Sitting in her electric powered wheelchair, not able to move very much below her neck since breaking her back, she’d obviously been crying. I smiled and was hopeful she’d join us. She just said, no, she wasn’t interested in leaving her room. She finally shared why she couldn’t bear to go back down to a dining room where she didn’t feel welcome; didn’t feel included.

Tears streaming down her cheeks and barely able to wipe at them, she said she’d gone down, looked for us, didn’t find us and then saw all the tables were set up for “families” complete with the name of the resident followed by the word “family”.

She didn’t see and we didn’t see any tables set up as they usually are for”communal dining” of residents. Only “family” tables. Although we included her in our “family”, because we’d only gathered once before, since she didn’t see her name but saw the names of almost all other residents who normally ate in this Main Dining Room, she felt left out.

No table for any resident who didn’t have “family” dining with them. I noticed a couple of small, empty tables without “tent” name identifiers. They were located in closed in areas and not accessible for anyone in a wheelchair and especially not the type our “new friend” used – larger than most, more accommodating for her broken back and for her larger sized body.

My heart was heavy. A facility representative had come to her room, she said;they asked her what was wrong, but no one made any attempt to remedy the situation or apologize for the oversight.

They told her she could eat in the upstairs dining room – which is always relegated to those who did not have the mental or physical ability to get downstairs to the main dining room.

Mom used to hate having to eat upstairs whenever a medical challenge made it impossible for her to move herself down to the first floor dining area. It’s difficult for anyone who wants “companionship” as almost everyone is in their own world and almost all have no idea if anyone else is around them.

This was her first Christmas in the facility. She came mid Spring earlier in the year. Being of very capable mind but highly challenged body, she’s had to rely completely on assistance for almost everything: dressing, undressing, movement into bed and out to her motorized wheelchair, ensuring her wheelchair is charged, emptying her ever present collection bag and being cleaned up when she soils her paper pants.

This once, not that long ago, highly capable, very intelligent, working woman with significant responsibilities is now confined to a life of hoping and waiting. 

She’s still highly verbal but in a facility, that can make your life even more challenging for “contributing”, you choose to weigh your words carefully and become more silent rather than speaking out.

She knows she’s basically helpless and that’s a major fear for her. 

I remember with Mom during the early days how she talked about some of the staff being “out to get her” and I thought this was due to her changing mental capacity/capability.

Hearing it from more than Mom, seeing the fear on faces, we’ve varied from standing up to those who show their “annoyance” at the needs and emergencies that arise to confronting them and reporting them to the facility and to the Ombudsman and State Department of Health and Senior Services.

Treading lightly at times, we too are concerned about leaving and having the resident traumatized by one or more staff members through ignoring calls for assistance, slowing down response time, coming in and turning off the call light but leaving and not returning for at least another 20-30 minutes.

She was hurt. She was embarrassed. She felt alone. A once capable leader in the business community with great responsibility now has to spend endless time waiting.

Not knowing, she’d had another “incident” with the facility that added to the day’s weight of being “different” and “not wanted” later explained her feeling lost and forgotten.

The night before, she’d been so sick she’d thrown up all over herself. She turned on her light. NO RESPONSE. She waited and worried as her sickness continued to take its toll. SHE CALLED OUT. No one came. After what must have seemed like an eternity, her phone rang, a friend was calling. “X” was in tears and said she couldn’t get anyone to come and help her.

Long story short: phone call was ended by caller; second call was placed and Nurse Manager was requested; Nurse Manager accompanied by Floor Nurse responsible for “X’s” side of the hall came in and apparently their demeanor did not suggest they were concerned for “X”s” welfare as much as they were about how long it had “actually been” from the time of the incident to the response.

Instead of ensuring “X” was well attended to, “X” feels like she’s receiving the third degree and when the Aide returns, “X” feels the cold and frustration the Aide generates because she’s been “reported”. The rest of the night, “X” tries to care for herself not wanting to endure the discomfort she feels is generated in the handling by the Aide as a means of retaliating against the “report” made on her.

WHAT’S WRONG WITH THIS PICTURE?  One of many residents who live in fear; taking whatever treatment they’re given because speaking up, speaking out, asking for help is not adequately overseen by higher administrative personnel with authority – they go back to their offices in other, more remote parts of the building, and staff knows they’re really not to be “bothered” for such trivial matters again.

It’s a holiday. A time we’re supposed to celebrate with others. A time to share Joy and Happiness. That is, if you’re included; if you’re a part of the “festivities”.

What had happened?  SIMPLY PUT:  THERE WAS NO PLACE IN THE INN FOR HER.

Just talk with the Administration, the Head Nurse and get it straightened out?  

The System itself is in great need of overhaul, of procedures and most importantly of knowing that there is “zero tolerance” of residence neglect.

I can only imagine how “X” felt in the dining room surrounded by images of being alone, without family and not even identified by name on a table where she should have been included.

ASHAMED. EMBARRASSED. Wanting to run away but without the physical ability to do anything more than move the lever on her chair and pray it still had enough charge to get her from the downstairs dining room back to her upstairs room without stranding her.

What’s needed to provide quality individualized service in Long Term Care Facilities?

• Effective communication between and throughout all levels of service and administration with a total Open Door policy promoted and posted throughout the facility.

• Residents seeing effective leadership. Total community awareness of remedies taken and challenges facing through Monthly Meetings with Open Invitations posted throughout the facility to provide transparency

• Responsibility at all levels – every problem, every challenge, belongs to every staff member

• Zero Tolerance for resident Neglect and injury.

• Admininistration that’s highly visible within the facility and actively engaged with residents on more than a “friendly” basis providing a feeling of safety and concern

• Open Door policy and in the lobby a listing of each name, title and location of all offices.

• A Suggestion/Recommendation/Complaint Box with forms laying beside them on each floor and in every “public”place for both residents and guests to leave comments and questions.

• Prompt attention to and response to each inquiry, concern or question. Maximum five business days response in way requested: phone, email or in person.