Transitional Trauma?

ESkayP

One of the things my mother's health care provider said was not to wait too long to decide on AL so that she would still be cognitively sound enough to transition smoothly. Unfortunately, I think Mom's condition was worse than I thought. The medical director who interviewed Mom didn't think she needed any extra level of care upon admittance to their AL facility, but I have noticed a significant decline in her behavior this first week. I want to ask the forum if her actions could be associated with transistion and therefore temporary, or is this a sign of her disease rapidly progressing? I'm not expecting a professional opinion, only what has been your experience with your parents so I can prepare myself. The situation is this, Mom is peeing in a bucket in the bedroom closet of her apartment at night instead of using the toilet in the bathroom. She uses the toilet during the day, at least when I visit, but at night, she gets disoriented and uses a utility bucket. She doesn't seem to think there is anything wrong with it. She says she has to go and can't find the bathroom, so she goes in the closet like it's no big deal! I'm quite alarmed that she doesn't see it as a problem. I'm afraid the staff will find out and demand she be transferred to MC right away. I want Mom to have a chance to engage with others in the semi-independent environment we chose for her before she is relegated to the limitations of MC, but I also want her care to be appropriate for the level of her disease. What do you all think? Is peeing in a bucket in the closet at night a wake-up call? Is she too far gone to get the care she needs in a regular AL environment?

harshedbuzz

There's an old saying around these parts that by the time family is willing to consider AL for their PWD, that cruise has sailed and a MCF is the appropriate level of care.

There is also a tendency for certain care communities to pull a bait and switch assuring family that their LO is an ideal candidate for their AL side while knowing full well mom will crash'n'burn and be transferred to their open MCF beds within a month.

It's also mom was showtiming during her entrance interview which clouded the judgement of the person deciding on placement. It's important to provide a level of care for mom at her most confused or neediest not set it for an increasingly rarer lucid moment.

Two stories experiences from my family about AL vs MC for a PWD who has progressed beyond being safe at home.

My Aunt P was guardian for Aunt C and chose the MCF within a CCRC for her. Aunt C was a delightful and charming person who remained sweet for the duration of the disease. When she joined the MC community, they often included her in certain activities with the AL folks like musical concerts, lunches out or in their dining room and craft projects during the day despite being a MC resident. She was included in their day program activities for a few years.

My Aunt N was placed in an AL setting by her POA. The POA was Aunt's DIL while Aunt fulltime caregiver had been my cousin who is deaf from birth and communicates in sign which meant family and professionals didn't appreciate the magnitude of Aunt's needs or the degree of scaffolding cousin had been providing. Aunt N went into a gorgeous AL with an ocean view and things went sideways fast. Aunt struggled to show up at mealtimes and the games and activities weren't dementia-informed which left her feeling unsuccessful and stupid when she tried to join in. Worse, the other residents quickly figured out that she had had a cognitive shift and at best ignored her. A few of the elderly mean-girls told her she couldn't sit at their table when Aunt P was visiting. The level of care wasn't appropriate either; she had one daily well check/medication visit in her room in the morning. She had a fall one afternoon and wasn't discovered until the next day because residents were free to eat in their own suites or go out to eat.

Specific to your mom's new behavior. I suspect she will be moved immediately if they become aware of her nighttime toileting issues. Toileting is an ADL (the skills will learn in early childhood), not an IADL (like driving or money management). Very often this kind of inappropriate behavior-- which is quite common and includes things like not washing hands, peeing in wastebaskets, leaving soiled TP on the vanity or bringing it to the caregiver or not using it at all-- is the last stage before incontinence begins.

In the meantime, if you wish to try to make this setting work for a time, you could make sure she has a nightlight in the bathroom and even a light on toilet rim itself. Putting a childproof lock on the closet might deter her as well.

HB

ESkayP

Thank you. I appreciate you sharing your detailed experiences. I needed perspective on this issue, and you've given me that. I hadn't considered that I need to choose a level of care based on Mom's neediest moments rather than her best moments of lucidity. It makes me sad that she's lost so much ground. I thought the extra support from AL would help her be her best self. They certainly made it seem that way.