The Alzheimer's Digest: The In-Home Care Dilemma

The point at which my sisters and I suddenly realized we had to get help caring for our mom is very clear in my mind. For months we'd been trading off, driving over to her house to do the cooking, cleaning, and shopping, preparing a day or two's worth of meals that she could heat and serve. We both had full-time jobs, and I'm a single mom of two kids, so we were stretched thin, but we tried to make sure one of us was there every day or two. Our third and fourth sisters, who lived further away, came on weekends and did bigger jobs around the house. Some old friends served as "safety watch," calling to alert me if they drove by after dark and the lights weren't on.

That lasted about a year, and then holes in our carefully woven safety net began to appear. There was the morning I arrived to find all the dutifully prepared single-serving meals left out and moldy on the counter. The day we found a blackened burned spot on the couch where mom had dropped a cigarette after falling asleep -- it was a miracle the house hadn't burned down with her in it.

We knew we needed help, but where to start? We signed up for an hour-long consultation with a local social worker, and took stock of our options. Since so many other Caring.com members are in the same situation, I thought I'd summarize the steps we followed to come up with a plan.

Assess your parent's needs.
Part of this first step was psychological; we had to overcome our pride, guilt, and sense of failure -- it was so hard to admit we couldn't provide mom's care ourselves. In doing that, we had to take a good hard look at what mom's needs really were and assess what level of care was needed for her to continue living safely on her own. Here are the kinds of questions we asked ourselves:
• Can mom remember to heat her dinner to a safe temperature and eat it without someone there with her?
• What if we called each night to remind her to heat her food and eat -- would that work?
• Can mom wash her dishes and put food away so it doesn't go bad?
• Can mom remember to take her medications at the right times?
• Can mom remember to check dates on food in the refrigerator so she doesn't eat something that will make her sick?
• Can mom get to the bathroom on her own at night?
• Can mom shower and get dressed without falling?
Assess your wants.
Once we decided we would definitely need to hire help, we asked each other which tasks we didn't mind doing, and which we'd most like to delegate. This is more important than it sounds -- the caregiving role is enormously stressful, and we were already burning out. We figured out that if we handed off the tasks we most disliked and kept those we were comfortable with, we'd be able to sustain the situation longer. Grocery shopping, cooking, and cleaning were high on the list -- we were thrilled to let someone else take on those tasks, and with them off our plate, it was much easier to cope with the ones we had left.
Assess what your loved one will tolerate, and how she might benefit.
We knew right off the bat that our mom wasn't going to let a caregiver into the house before she was up, dressed, and had her morning coffee. So we worked around that, and focused on getting her help with lunch, dinner, and taking her medications regularly. On the other hand, we knew that she'd love having someone to read out loud to her, now that her eyesight was bad. And the social worker pointed out that with a caregiver to steady her, she might be more likely to get out and walk.
Choose between agency and independent care.
For most people, the main criteria in this decision is cost; there's no question a caregiver hired from the community is less expensive, in terms of the hourly rate, than one provided by an agency. However, it quickly became clear that there were other things to consider as well, that might factor into both our emotional comfort level with the situation and into the overall long-term cost.
• Were we comfortable interviewing candidates, calling references, and running background checks to find someone we trusted? (We tried, and discovered it was harder than we thought.)
• Were our schedules flexible enough to drop everything and come to mom's house if the caregiver called in sick or her car was in the shop? (Nope.)
• Did we want other possible employees available on short notice if mom fired a caregiver? (We did.)
• Were we worried about insurance liability issues if a caregiver were to be injured while caring for our mom? (We were.)

Based on these steps, we realized we'd be better off with an agency caregiver, even if the hourly cost was higher, since missing work would cost either of us more than that. (But of course each of these decisions is highly personal, and there's no right and wrong. I have friends who've hired independent help, and that's worked out great, too.) Next, we went on to look at my mom's budget, and figure out where we could cut other costs, where hiring help might offset some expenses. We also looked at schedules, and figured out how to get the most relief with the fewest paid hours.