How Helping Goes Wrong in Dementialand

I believe most people are good most of the time. I think most people want to help other people. But helping isn’t always as simple as it seems…

This is how helping should go–Someone needs help. We receive a signal that help is needed. We reach out. The other person accepts our help gracefully. We provide the type of help that they need in the way that they prefer to receive help. They are thankful. We feel good about ourselves. In the future, they help us.

We all know that this isn’t always what happens. A lot of things can go wrong, actually, despite our good intentions. Maybe the person denies they need help in the first place. Or maybe you find out later that the person was deceiving you and didn’t need help at all–and you feel betrayed. Perhaps you provide too much help, too little help, or the wrong kind of help. Maybe you were asked to give help that you didn’t have the qualifications, skills, or knowledge to provide.

It could be that they don’t seem to appreciate your help. They give you an inadequate thank you or no thank you at all. They could thank you in a way that you don’t recognize. Maybe we start to give help and they push the limit…leaving us feeling like they have taken advantages of us. Or when we need their help in return, they seem to forget that we provided them with help in the past. If you think about it, the whole process of providing and receiving help is pretty complicated. It’s no wonder that sometimes things go sour.

There are unlimited ways this plays out in life. Think about all the times you’ve tried to help people. You had the best of intentions. But things didn’t go as you’d hoped. It happens a lot…in big ways and small ways. It leaves us hurt. And it happens in Dementialand.

You probably think I’m talking about care partners who are trying to help individuals with dementia. Sure, that’s part of it. I can think of many times I’ve tried to help people with dementia and it hasn’t worked out as planned. Once I helped a woman at a nursing home walk to the dining room. I realized later that she thought we were leaving the facility to go to a birthday party. When she understood that I was helping her walk to the dining room, she said I was a conniving little girl. (For the record, I was about 35 years old). I wanted that warm, fuzzy feeling you get after you lend a hand. Nope. I got an insult instead. I didn’t take it personally, but it wasn’t pleasant nonetheless.

Care partners are often trying to help but–in the opinions of their loved ones with dementia–providing help that isn’t needed. Care partners may think they are helping by reminding their loved one that they no longer have a driver’s license. The care recipient may not see that as help. In fact, they may see it as hurtful. It’s difficult to help someone who doesn’t think they need help. But so many of us have to do it–and not just in Dementialand. (One of the biggest challenges I’ve encountered in my personal life and professional life is the complicated issue of trying to help someone who does not see that they need help–or thinks that the type of help they need is totally different than the type of help you think they need. This happens frequently in my job as a college professor. It also happens in my marriage, and–to be fair–every marriage.)

It sounds like a dumb statement make, but it’s worth saying it explicitly: People with dementia can be helpful and often are quite helpful. They can be the helpers, as well as the recipients, in scenarios. I have a friend with younger-onset Alzheimer’s who is quite capable of being useful in many ways. She has always been quite talented, and she’s still in the early stages of the disease. She struggles to get people to accept her help. They worry about whether she’s capable so they take away her opportunities to contribute. When she does help, she is not genuinely thanked; instead, she feels patronized, like a small child allowed to help her mom in the kitchen for the first time. Her attempts to help often leave her feeling insulted rather than fulfilled.

I know a lot of families who are struggling with caring for a loved one with dementia. I am always encouraging others to reach out to these families and provide assistance. They may need emotional help, like someone to listen, but many times the help they need is more practical (mowing the lawn, running errands, etc.). Sometimes I am critical of our communities because we don’t reach out to these families. However, I have to admit that many times these families do not accept help when people do reach out. Accepting help is part of the equation, too. We need to accept offers of help.

Sometimes accepting help makes us feel guilty, but it shouldn’t. A colleague of mine had breast cancer a few years ago. She’s a person I really enjoy and admire, so I gave her the vague, “Please let me know what I can do to help you.” It was a sincere statement. I wanted to be able to help, but I didn’t know how to help without being intrusive and pushy. I was incredible grateful to her the day she called and asked if I could pick her up from a medical appointment. She needed a ride, and I needed a way to feel helpful. I was probably as thankful for the opportunity to help as she was for ride. That’s the way helping should work. She had no idea how grateful I was that she followed up on my offer. Some of my families who are affected by dementia should take a lesson from my colleague.

When I think about caregiving in Dementialand, a lot of stress and many conflicts stem from attempts to help that don’t go as planned. Our idea of the help required is not congruent with the other person’s idea of the help required. We may step back and take a different approach. We decide to provide more help. Or less help. Or a different type of help. We may try to explain our approach to helping in an effort to convince the other person that our type of help is the type of help that they need. We do something different because what we are doing isn’t working. Sometimes our new strategy doesn’t work either. Or maybe it works for a while…until it doesn’t anymore. And we adjust again. It’s a dance.

Our attempts to help sometimes end in hurt, and that’s inevitable. But we keep trying to help.


3 thoughts on “How Helping Goes Wrong in Dementialand

  1. I get something useful from each posting. The bonus – I know your Mom and Dad, we were neighbors until they retired.


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