Caregivers Are Only Human


Outsiders do not understand. You are so right.

Everyone loses their temper once in a while. People say things to each other that they don't mean under far less stressful situations. Caregivers are under an incredible amount of pressure, and they are not immune to letting their emotions get the best of them. Dementia adds yet another challenge to the mix.

I suppose I could say a dementia patient won't remember what you say to them in haste, because they won't. When this happens (and in truth it happens far more than is ever admitted), I am sure the family member or caregiver feels even worse afterwards than the patient does.

I am certainly not condoning yelling at a patient, but let's be honest here. We are all human. No one understands what a person caring for a dementia patient goes through. Yes, the patient is constantly dealing with the disease, but their loved ones are, too.

To say that family members or caregivers do not and should not ever lose their composure is simply untrue and unrealistic. What is important is that we are able to recognize our limits and take things down a notch.

Anyone who has been married for any length of time will tell you it's not always a bed of roses. Some couples have civil disagreements, while others may have knock-down drag-out fights. In the end, most feel sorry for what was said. Again, I am not condoning this behavior, but we deal in reality here. To think this never happens is just being dishonest with yourself and everyone around you.

The patience of Job—that's what it takes to be a caregiver. Even then, there are times you simply can't handle it, whether it is at 3:00 AM from another sleepless night or something as simple as answering the same question over and over.

Please don't beat yourself up over this. I have always been an advocate for the patient. As one, I know what they go through. But I am not naive enough to think that tempers will not flare.

Trying to get an agitated, confused person under control and calm the situation down is an endless job for a dementia caregiver. They use redirection, music, medication, changes in environment, whatever may possibly work to pacify them. When nothing seems to do the trick, this is when the anger, frustration and stress begins to build. Beyond feeling exasperated, many begin to feel powerless. These well-intended efforts to soothe a distraught loved one fall flat. That is the nature of dementia, and with some patients, this distress never ends.

Whether you are cut out to be a caregiver or not, there comes a point when the pressure is just too much. Respite, medications, placement in a long-term care facility—there are many options available to the patient and their caregiver.

I hold our caregivers in the highest regard, but I also hold them to the highest standard. I know most hold themselves to even more stringent standards, simply because of how much they care. But if occasional snaps begin to turn into larger, more frequent episodes, it is time to look into other options for care. This is burnout peeking through, and there is no room for a frazzled, burnt out caregiver. There's just not. It's bad for the caregiver, and it's bad for the patient.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

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Thank you for this article, Rick. My mom passed a couple of weeks ago and I was her caregiver for 18 years. She had dementia and, especially in the last couple of years, I found myself snapping at her when I was stressed out. Needless to say, ever since her passing I have felt guilty for those times when I was short tempered and even shorter on patience. Your article reminded me that we as caregivers really have to be kind with ourselves and forgive ourselves when we find ourselves being human.
I certainly agree. I find my self yelling more and more lately, because some of the things my husband does are so ridiculous and frustrating. I recommend getting any help you can. My husband attends Day Care two days a week and I have a caregiver coming in another afternoon each week. I also have family and friends that will give me a couple of hours each week. If someone says "can I help", let them. Even a couple of hours gives you time to breath.
In response to question 1, my mom is also consistently negative and repetitive and it does grate on me and I do yell (or rather raise my voice) because it just drains you of all your energy. When that happens, I tell myself I need to breathe (which I do - 10x in and out) and then sometimes I may just walk away for 5-10 minutes to gain my composure as well. That sometimes helps too. But most of the time when she is like this, I usually just agree with her and let her babble on about whatever it is that she needs to complain about (while having my earplugs with me so I can also listen to some music to soothe my mounting frustration - which also helps). She doesn't know what I am doing and then I just nod my head and she thinks I'm really listening (which is partially true) but I'm not. I know this sounds mean and maybe careless but trust me, I've been taking care of my mom now for 7 years and it doesn't get easier. Most days I cry a lot and I hate my life too but you've got to realize that 1) you are still a good daughter/son; 2) you cannot do everything all the time, and 3) this is not your mother talking but rather the disease - keep telling yourself these things and it might help. Hope this was helpful.