About a year and a half ago, my dad started using a home health care agency to provide in-home care for my mom. I had been a part-time caregiver for my mom off and on for a few years before I finally admitted to myself and others that I couldn’t handle it anymore. I was sinking into a depression and my caregiving role was consuming my life. I needed to take a step back in order to protect my own sanity. While I realize that this isn’t even an option for most people, it was for me, and so that’s what I did. My sister and I had several tough conversations with our dad, finally convincing him that it was time to hire a home health care agency to take over our mom’s care. Although he was reluctant at first, he agreed and we began the process of transferring my mom’s in-home care to the “professionals.”
Fast forward to now and in that year and a half, my dad has tried at least fifteen different home health aides from the agency. We have found one who is amazing. ONE. A few others have been decent or good, maybe even great. Not all, not even most, just a few. The one amazing aide that we have covers a bulk of the hours, but obviously she doesn’t work 24/7/365. There are days that she has off, days that she is on vacation, and days that she’s out sick. Many times, the agency is left scrambling to find a replacement and my dad has to take whoever they can get. If my mom’s regular aide is on vacation for a week, my dad might get two or three different people to replace her throughout the week. This break in routine for my mom causes a lot of additional stress on both her and my dad.
Aside from the break in routine, it is very stressful for my dad to continuously welcome strangers into his home to care for his wife. It’s hard to trust a stranger to take care of your pet while you’re not home, let alone to take care of your wife who has advanced Alzheimer’s. You don’t know if you can trust someone because you never know what they will do or how they will act when you leave. Imagine constantly leaving your home and your wife in the hands of a complete stranger. That’s stressful as hell! My dad would never leave my mom home alone with a stranger on day one, so if the aide is brand new that day, then chances are he’s not going to feel comfortable leaving the house at all. So, what’s the point in having someone there in the first place? They’re supposed to be there to take care of my mom so that my dad can get a break to go out and do things. It’s not helpful to him if he can’t even leave the house while the aide is there.
Speaking of what’s not helpful to him… While many of these aides are wonderful and clearly have experience dealing with people who have Alzheimer’s, there are many more who seem to have no freaking idea what they’re doing. They have no idea how to talk to my mom or how to try to engage her. Often times, they speak too fast, too loud, and use way too many words. Some of them practically shout at her, as if they are either really annoyed with her or they think she’s deaf. When my mom says that she wants to go home, they just repeatedly tell her that she’s already home, which we all know is a big no-no. Some of them have absolutely no patience with my mom and seem to be inconvenienced by her presence in her own home. Some of them might try to talk to my mom by asking her a question or two, but when she doesn’t respond, they just give up. They don’t try singing with her, listening to music, or reading to her. They go sit across the room and look at their phone. It seems like some of them are just plain lazy and they just want a mindless babysitting job. They don’t have any desire to even try to interact with my mom or bring her out of her Alzheimer’s shell. I know that there are many limitations to what my mom can do, but my dad didn’t hire in-home care so that my mom could sit in her chair alone and be ignored all day. Don’t they know that it’s not about what the person can no longer do, but it’s about figuring out what they can do? I mean, that seems like Caregiving 101 to me. Then again, maybe that’s not a required course for them to take.
To be blunt, many of these home health aides are unreliable, untrustworthy, inconsiderate, and insincere. A lot of them seem like they just walked into the job with absolutely no training. My dad often feels like he has to train them himself when they show up at his house. Some of them are consistently late or they try to leave early. I’m not sure who is in charge of the schedule, but it seems like more of a general guideline of dates and times rather than a set schedule that my dad can rely on. Aside from showing up late and ill-prepared, some of these aides are downright rude. They say things to my dad that I wouldn’t say to my worst enemy (i.e. my Facebook post from last night). They seem like they would rather be removing ceramic tile floors with their fingernails than taking care of my mom. They have absolutely no interest in her or her care. Where is the compassion? Where is the empathy? It often seems to have been misplaced along with their training.
My point is that home health care is failing us. There are only so many agencies with so many employees and there’s no guarantee that they are even remotely good at their jobs. Sometimes the aide causes more problems than it’s even worth to have her there in the first place. My dad is often left to clean up the mess that was created by whoever took care of my mom that day. It’s a joke. They are supposed to make his life easier, not harder, but sometimes the easiest thing is to just do it yourself. No one is ever going to care about your loved one as much as you do. The most reliable and caring help that you will ever find is your own family. But, what happens when it becomes too stressful and too emotional for the family members to provide care? Where do you turn? Your options are limited. Once you choose home health care and jump through the flaming hoops created by insurance companies and Medicaid, you might even be entitled to care that is paid for. Shouldn’t you then at least be able to rely on good, quality, consistent care for your loved one? Is that really too much to ask for?
I realize that many of you have no help whatsoever and probably think that I’m complaining about nothing. I feel for you. I really, truly do. I don’t know how you do it. But, those of us who do have the option of in-home care realize that it’s far from perfect. Hell, it’s not even acceptable at times. It hurts more than it helps.
My mom had breast cancer back in the 90’s and my dad recently told me that the most stressful part about that whole experience was dealing with the insurance companies. Do you know what he said is the most stressful part about my mom having Alzheimer’s? Dealing with home health care.