Sea Change


These past two weeks, the calls from staff members at J’s assisted living facility have hit like Pacific Ocean waves. Barely have I had the chance to absorb one before a bigger one clobbers me without warning.

First was the call about J taking the elevator to the fourth floor of her building where she entered the unlocked room of another resident, made the bed, and lay down. Next was the disturbing call about J throwing soiled Depends at one of the nursing aides when the aide tried to get her to take her medication. In another call, I learned about J’s refusal to shower. J lives in assisted living now, where she can turn down help and there is little the staff can do.

A different staff member called to tell me that J followed one of the other residents to the independent living building and stood outside her room, staring.  In yet another call, I learned that staff members had to cajole J to go to breakfast one morning. As she rode the elevator up to the dining room, she took a bite out of a cardboard box a delivery person was carrying.

A few days later I found that things were worse. J clearly had not showered since my last visit because she was wearing the same socks I had put on her on Wednesday evening. When I went to undress her, she had on two pairs of disposable underpants. The inner pair was soiled; the outer pair was swollen with urine. In talking with the staff, I learned that J was again refusing to shower or to accept help toileting.

A couple nights ago,  I got another call informing me that J not only wouldn’t shower, but she’d hit her favorite caregiver.  Before I got this call, I’d sent a lengthy email asking for a meeting with the director and staff to discuss J’s care plan.  I thought the problems were with the continuing care retirement community and its staff. Surely, these weren’t problems with J.

I wrote, “J cannot be the first resident with Alzheimer’s disease this facility has cared for who is functional enough to live in assisted living provided she gets appropriate assistance.  Based on what I’ve observed, I don’t think she’s getting the assistance with daily tasks of living she needs.  I am confident that if we put our heads together, we can create a plan that meets her needs.”

Now I think I was mistaken.  J’s primary care doctor called me this week and advised me that the staff at J’s facility is going to strongly suggest moving J to the Alzheimer’s wing.  Her behavior is such that they simply can’t manage her even at the higher level of assisted living care.

I knew J’s move to the dementia unit was not far off.  Facing this inevitability doesn’t make it any easier, however, especially as the visits by other family members and friends will continue to wane.  Those who do visit don’t understand, just as I only recently accepted, that J puts on a good show while we’re there.  It is hard to admit that she can be resistant and even aggressive when we’re gone.

When I first visited the Pacific Ocean and was toppled over and over by the waves, I learned that I could swim through them to limit some of the buffeting.  That’s also the only choice now.


One thought on “Sea Change”

  1. I can’t believe how similar our stories are! My partner, who’s name also begins with J, has been diagnosed with early onset Alzheimer’s since 2012. We have two kids, a son and a daughter. I still have my J at home but it’s getting close to the time that I will make the decision to put her into full time care. Your blog hits very close to home! Would love to communicate with you if you have the time!


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