I had the privilege of facilitating an Alzheimer’s caregiver support group meeting this afternoon. For several years I facilitated my own caregiver support meeting but retired from doing so in 2013. Earlier this year I was the substitute facilitator for this same meeting and was so very impressed with the group of ladies I met then, a few of whom were in the meeting again today.
One of the gals, Georgina (not her real name) lost her husband to Alzheimer’s in January. She told the group that while her husband was still alive, the two of them were always invited to a Holiday gathering of friends – all married couples – to celebrate the Christmas season. She found out recently that she was not invited to this year’s event.
Quite frankly, she hadn’t yet thought about the Holiday party, thinking the invitation might be forthcoming but certainly wasn’t stressing out about it. Quite innocently, one of her friends mentioned the party in passing, saying, “Looking forward to seeing you at the annual Christmas celebration” not realizing that the host of the party had not included Georgina on this year’s guest list.
The attendees at today’s meeting had these thoughts to say about the situation: Read the rest of this entry »
Thank you for returning to this multi-part series on long-term care residents’ rights. At the bottom of this article, you will find links to the previous five postings. As this is the last in the series, I want to advise my readers that I have in no way covered every topic that could be covered in a series such as this one. I have, however, covered complaint topics that quite commonly occur in long-term care settings. In most complaint categories, more than one residents’ rights law has been violated. For the most part, I have only mentioned one aspect of the law that addresses the rights violations.
Today’s topic covers the umbrella topic of dignity and quality of life. Without exception, every rights violation is an infringement of a resident’s dignity and a detriment towards enhancing the quality of life residents should expect to experience. The same holds true whether that resident lives in a “Champagne and Chandelier” facility or a “Generic Brand X” facility. Regardless of how fancy, regardless of how bland, the same rights are afforded to all residents. All situations listed in this six-part series assume a resident is cognitively capable of making his or her own decisions.
Breakfast in bed, pee on the side
I rolled over in bed thinking I might get a few additional minutes of sleep, but those potential minutes were rudely interrupted by the assault from the room’s overhead light, the hustle of someone rushing into my room, and the abrupt raising of the head of my electrically powered bed. I don’t know if you’ve ever tried to remain curled up on your side while half of your bed is put at a 90 degree angle, but trust me, it’s not possible and it’s not comfortable.
“Hey, Gloria, time for breakfast. Come on, open your eyes and sit up so I can give you your breakfast tray.”
I’ve lived in this nursing home for three months now and every time one of these care people talks to me, they call me by my first name, and in my eyes, that’s a sign of disrespect. “First of all, I’ll remind you that my name is Mrs. Lewis, and second of all, I absolutely cannot eat the morning meal prior to going to the bathroom. Please help me to the toilet and then I’ll have my breakfast.”
“No can do, Gloria, you’re just one of forty other patients I have to personally deliver meals to this morning. You should have thought of that earlier and asked one of us to take you to the toilet before we started delivering meals.”
“But I was asleep, and besides, I told the head nurse many times that I require toileting assistance and that I require it before my morning meal. How many other times must I make this request?”
“I don’t know, how many?”
I looked at this uncaring individual and pleaded with her. “Please won’t you take me to the potty? My bladder is ready to burst!”
“Look, I’m already running behind. Just go in your pants, that’s what your nighttime diaper is for any way. Sometime after your breakfast, someone will clean you up, but it won’t be me. After I deliver all my trays, my shift is over.”
Imagine, if you can, not having the opportunity to use the bathroom after a full night’s sleep, and trying to enjoy a meal that is placed before you. Then imagine not being able to hold it any longer and peeing yourself and sitting in it for who knows how long. The above scenario is real. A family member of mine experienced this exact scenario. I also am acquainted with a gentleman who, after asking three times in a half hour period to be assisted to the restroom so he could evacuate his bowels, he was told “Go in your pants. I don’t have time to help you right now.” That neglect does not preserve a person’s dignity, nor does it promote quality of life.
42 CFR 483.15 Quality of life. A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life.
(a) Dignity. The facility must promote care for residents in a manner and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his or her individuality. See also Washington State law RCW 70.129.005 and RCW 70.129.140
What follows are a few other frequently occurring scenarios found in LTC residential settings:
Visitation policies: residents have the right to receive visitors of his/her choosing and a facility must not interfere with such access. There is no such thing as visiting hours, regardless of the LTC setting. If an adult son’s work schedule is such that he can only visit before 8 a.m. or after 9 p.m., reasonable accommodation must be made to facilitate his visit.
Choices regarding schedules, clothing: regardless of LTC dining room and meal hours, a resident has the right to receive meals outside of those hours. For example, if a resident is not an early-riser, he should still be able to acquire a suitable breakfast meal; this does not mean that he has full access to all that was offered prior to the “end” of breakfast hours, but he should still be able to eat breakfast items. A peanut butter & jelly sandwich does not qualify as such – unless, of course, that’s his choice. Unless a resident has turned over the responsibility of making daily clothing choices to a staff person, a resident must be given the opportunity to make clothing choices that are important to her. Clothing choices promote individuality. Each of you reading this article dress as you please; that shouldn’t change just because you move into an institutional setting.
Isolation & seclusion: punishment to a resident for perceived misbehavior in the form of prohibiting participation in dining room meals and/or activities of his choosing, is not appropriate and is a complete violation of a resident’s rights. A better response to behavioral issues is to discern the cause of said issues, e.g., depression, medication anomalies, medical conditions such as a urinary tract infection (UTI). Resolve the cause, and you resolve the effect.
Series links: Part 1, the right to make choices that are important to the resident; Part 2, admission polices, waivers of liability; Part 3, eviction and discharge process; Part 4, substandard and neglectful care; Part 5, accepting or rejecting medical care.
If you or a loved one need assistance regarding LTC residents’ rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.