Breaking Free From the Caregiver Prison: Can Assisted Living Social Workers Help?

This article is a follow-up companion piece to Allan Vann’s previously published article, “Advising Alzheimer’s Caregivers About Assisted Living,” which appeared in Annals of Long-Term Care in the January 2014 issue. You can access this article and his supplementary checklist for evaluating assisted living residences here. Allan also provided an update to this article titled “Looking Back at the Assisted Living Decision,” which appeared online in June 2014 and can be accessed here.

People with Alzheimer’s disease in need of 24/7 care and supervision are often placed in assisted living residences (ALRs) or nursing home facilities when caregivers can no longer provide the care they need at home. My wife, Clare, has Alzheimer’s, and after being her 24/7 caregiver for several years, when social day care programs no longer provided me enough respite time I had to place Clare in the dementia unit of an ALR. She has now been living apart from me for more than a year.

Initial Benefits To Me As A Caregiver

For the first 6 months after placement, I came to visit Clare daily from between 3 and 5 pm, brought Clare to her dining room for dinner, and I went home. Sometimes I signed out Clare much earlier in the day to take her out for dinner and/or to enjoy recreational activities. Whenever I took Clare out, I’d always have her back in time for her 7 pm activity. After those first 6 months, however, Clare grew increasingly anxious from the time dinner ended until her next activity began at 7 pm, and she sometimes remained anxious throughout the rest of the evening. Clare was missing me a lot and asking when I was coming to visit, forgetting that I had just been there hours earlier. I was receiving evening calls at home from ALR aides asking for my help. Clare would get on the phone very upset and I would calm her down, or return to the facility to calm her down in person.

The ALR social worker said that Clare was increasingly requiring individualized attention from aides at these times, but the facility was not staffed sufficiently to allow one of their aides to spend time exclusively with one resident on a regular basis. The social worker suggested that we try an experiment: I would either hire an aide or stay with Clare myself between 5:45 pm and 7 pm, when Clare was most anxious. The hope was that if Clare was not anxious heading into her 7 pm activity, she might remain calm throughout the evening. Clare’s happiness was and remains my number one priority, so I told the social worker that I would continue visiting from 3 to 5 pm and bring Clare to dinner as I had been doing, but then I would stay and eat a “bag supper” in an adjacent room so I could be with Clare again from the time she finished dinner until 7 pm. The experiment worked, and Clare’s anxiety in the evenings disappeared, just as we had hoped. But there was an unintended consequence for me.

The Unintended Consequence: Being Trapped in a “Caregiver Prison”

After visiting from 3 pm and 7 pm for 4 months, I realized that I had re-entered caregiver prison. There’s no other way to describe it. I felt trapped. Adding in a half-hour on each end of my visit for travel, my daily visits now took at least 5 hours out of my day, 7 days a week. I started resenting those 5 hours I was giving up each day. I also was tired of eating a “bag supper” of PB&J sandwiches and/or fast food every evening. I was usually eating a real supper later on that evening, and I had gained 15 pounds during those 4 months. I wasn’t sleeping well, and I was mentally, physically, and emotionally exhausted each day. Some of my closest family members and friends suggested that I wean myself away from those 4-hour daily visits, but I resisted, until I realized that I had unintentionally re-entered “caregiver prison.”

This was not the first time I had been in caregiver prison. For several months prior to her ALR placement, Clare was with me every minute of every day except for the 20 hours each week that she spent in social day care programs. Unable to leave Clare alone unsupervised and with her unwillingness to accept a companion or health aide in our home, I felt like a prisoner. Wherever I was, she was. The lessening of stress was palpable once Clare was placed in her ALR. I had my freedom back. I had my privacy back. But I let myself get lulled into forfeiting that freedom and privacy six months later by agreeing to increase my daily visit time from 2 to 4 hours.

I made the decision to try another experiment. I decided not to arrive anymore at 3 pm, unless I was taking Clare out that afternoon. Instead, I would not arrive until Clare finished her dinner, hoping that she would not even realize that I was arriving later than before. I would then visit with her until the 7 pm activity began. My experiment worked. Clare was enjoying spending that 3 to 5 pm time slot in activities with her group, totally enjoying her time with me after dinner, and hardly missing me at all after I left each evening at 7 pm. This new experiment was a win-win; Clare was enjoying her evening activities without daily anxiety, and I was no longer feeling as if I were in caregiver prison.

I cannot fault the ALR social worker for not suggesting this modification earlier. To her credit, the social worker did speak with me several times to review how things were going, and each time I said that all was well. I never once shared that whereas the experiment seemed to be working wonderfully for reducing Clare’s daily anxiety, it was increasing my daily stress and anxiety. The ALR social worker had no way of knowing how physically, mentally, and emotionally drained I was each evening. She had no idea how poorly I was sleeping and eating. Had the ALR social worker known about these unintended consequences, I am confident that she would have intervened earlier to suggest a modification to that first experiment. In fact, the same week I decided to cut back and notified the social worker to that effect, I was told that she was going to actually suggest a similar cutback in hours to me.

Can Institutional Social Workers Help Prevent Caregiver Prison?

Is there a way for social workers in institutional settings to be more alert to possible unintended consequences to caregivers of their residents? Should social workers consider ways to elicit personal information from former caregivers of their dementia residents when major changes are made in routines? Social workers in institutional settings cannot possibly establish close personal relationships with caregivers that develop naturally in other settings, such as in weekly support groups. If I had still been attending weekly meetings in a spouse support group, I would have shared personal information about the negative effects those longer visits were having on my health and stress level. I am sure that the support group social worker would have suggested that it was time to modify that experiment.

In a caregiver support group, the needs of caregivers are the main focus of the social worker. But in an institutional setting for people with Alzheimer’s, the social worker’s focus is on the needs of the resident with Alzheimer’s. And that is how it should be. But, perhaps, some brief questionnaire or other process can elicit helpful personal information to evaluate effects on caregivers when there are major changes made with resident-caregiver interactions. Of course, any such questionnaire or process is still dependent upon the caregiver feeling comfortable enough to share such personal information. Had I been asked if the additional daily visit hours were causing me greater anxiety, or causing disruptions in sleeping or eating patterns, I might have volunteered that information. Or, truthfully, I may not have been honest enough to share that information.

But this might be a matter worthy of further consideration. A case can be made that ALR social workers already have enough on their plate dealing with their caseloads of dementia residents and regular residents without adding more time-consuming responsibilities dealing with the former full-time caregivers of their dementia residents. However, if social workers can come up with a process that can elicit helpful information and does not require too much additional time, that could help social workers prevent some former caregivers from returning to caregiver prison.

Allan S. Vann is a retired public school principal and a caregiver to his wife, Clare, a retired high school teacher who received a diagnosis of early/young-onset Alzheimer’s disease when she was 63 years old. He maintains a blog at https://allansvann.blogspot.com, where he posts copies of his published articles about their journey with Alzheimer’s.