Good For You, Not For Me in Dementialand

I’ve started using a new line in the next few weeks. Good for you, not for me.

You started doing adult ballet and it’s really changed your life…and you want me to tag along? Good for you, not for me.

You raise organic chickens in your backyard and think everyone should consider doing it so they can have higher-quality eggs? Good for you, not for me.

You have completely cut caffeine out of your life, feel great, and think I should do the same? Good for you, not for me.

I’ve got no problem with adult ballet. In fact, I think it’s pretty cool. I admire people who raise their own chickens (although I’m glad they don’t live next door to me). And I commend people who cut out caffeine. Yet I don’t plan on doing any of these things.

Why? Because I’m me. I’m not you. I’m different from you. What works for you might not work for me. And what works for me might not work for you.

I’ve only realized the last part of this recently. I must admit that I have on many occasions tried to help people by making suggestions that are based on me rather than them. Are you stressed? Running works for me, so you should go running. Wanna train with me for a half marathon? I publicly apologize to those friends I have done this to. Maybe running isn’t your thing. I get it now. And I’m sorry I pressured you 500 times to register for a race without listening when you said running wasn’t your thing. I wasn’t helpful, and I understand that now.

We are different people. We react differently to situations and events. We are helped by different coping strategies. We are just different.

In Dementialand, I am sometimes asked questions like, “What would you do if it were your dad?”

These questions are usually in reference to living arrangements and care. Is it time for someone to move to a nursing home or memory care community? Should we consider moving them into our home? Do we need in-home health care? Should I quit my job to stay home with them all day? Would it be a good idea to call hospice?

When tough questions come up and a person can tell I’m intentionally avoiding giving them straightforward advice, they often cut to the chase and ask, “But if this were your loved one, what would you do?”

I know why they ask this. A few times, I’ve sat in a doctor’s office and asked the same question. If I’m getting lost in a plethora of information and don’t trust my own instincts, I ask an expert–What would you do?

Even if the expert answers that question honestly, how much information does that really give me? That person is not me. They are a different person with different priorities. They have different vulnerabilities and fears. A right choice for them might be a wrong choice for me.

I was visiting recently with a woman in her 70s whose husband had Alzheimer’s. She was struggling with whether or not he should remain in the nursing home he had lived in for a couple years or come home with hospice support. We talked about the potential advantages and disadvantages of both options. Then she asked me, “If it were your husband, what would you do?”

It’s not really a fair question–for a few reasons. First of all, I struggle to put myself in that mindset. I cannot, with confidence, say what I would do. I can speculate, of course, but it’s insincere of me to tell you what I’d do in your situation when I’ve never been in your situation. I haven’t walked a mile in your shoes. I’m not gonna pretend I have.

Also, how much does it matter what I’d do in your situation? Because it’s your situation. What I would do is not always what you should do. It doesn’t matter that I know a lot about dementia. It doesn’t matter that I’ve been involved with the hospice industry. It’s still not my situation. We need to talk about your situation.

Last summer I read Being Mortal by Atul Gawande. Gawande is a physician who must visit with patients and their families about end-of-life decisions. (He is also my current favorite author, although I can’t figure out when he has time to write books.) He suggests that these discussions require no less skill than performing an operation, and I could not agree more. In these discussions, he asks about people’s hopes and fears. What are your hopes about this situation? What are your fears about this situation?

I decided to ask the woman these questions. Her hopes and fears were unique. Her hope was that he would die a peaceful and pain-free death surrounded by family and good friends. No surprise there. She also hoped that she’d be able to keep her part-time job as a receptionist because she felt it was the only thing keeping her sane. She hoped her husband’s care wouldn’t be expensive because he had saved for their grandson’s college fund, and he’d be heartbroken if that money was spent on his end-of-life care.

Understandably, she had many fears. She worried about providing care at home. She worried he’d fall out of bed and she wouldn’t have the strength to help him up. She was scared that she wouldn’t be able to take care of his incontinence. She said she wasn’t sure she had the stomach for it, although she hated herself for feeling that way. She wasn’t sure if her son and daughter-in-law would be all that helpful if she brought her husband home even though they promised they would be.

She had recently been to an Alzheimer’s caregiver support group. Unfortunately, the support group was a catalyst for another fear. She feared that the people in the support group were better caregivers than she was. Some of them visited their loved ones in the nursing home for most of the day. She could only handle being there a couple hours. A few of them vowed to keep their loved ones at home because they didn’t believe a nursing home could provide adequate care. She knew she would have had a breakdown if he had lived at home the past couple of years.

She’s not an inferior caregiver. She’s just a different person. She’s not doing it wrong, and the other caregivers aren’t either. It’s not a matter of wrong or right. It’s a matter of figuring out what works for you. We get ourselves into trouble when we forget we are different from other people. When we try to imitate what works for others without paying attention to who we are, we struggle.

Once I was convinced to become a member of a church that wasn’t a good fit for me because it was a perfect fit for a friend. I’m not saying it was a bad church. It just wasn’t my church. I tried to make it fit but it just didn’t. Good for you, not for me.

I once signed up for a six-month Tai chi class (and hated every minute of it) because someone told me how Tai chi had positively impacted them. I spent my time in the class trying to figure out why I was so bored by moving in slow motion when everyone else in the class seemed to think it was so powerful. Good for you, not for me.

In Dementialand, we are confronted with a lot of choices. Should Mom move to a nursing home? Should Grandma take Aricept? Should we have a home health care aid to help Mom bathe? Should we consider an anti-depressant for Dad? Should I go to counseling to help me deal with this stress?

There is no universal right choice. Someone else may be in a similar situation, and the choice that has worked out perfectly for them may turn your life into a hot mess.

We can celebrate that a person has found what works best for them while understanding that it may not be for us.

Good for you, not for me.

 

 

6 thoughts on “Good For You, Not For Me in Dementialand

  1. Thank you for a powerful post. It’s so important to not judge people for the choices they make. In addition, your post encourages us to not be harsh on ourselves for the choices we make. I often say that I am my own worst critic.

    Love your blog. It has helped me in many ways!

    Like

  2. This is so helpful to read in print! And as a caregiver I feel ultra in-the-middle: between my spouse and all the caring people around her – family, doctors, friends, Much responsibility, and so often it comes down to MY decision. Even when I collect ideas and opinions from group friends, bloggers, and officials of all kinds, it’s still down to me. Thanks for writing this!

    Like

  3. Once again, a great read. Never in our wildest dreams, did we imagine making such tough decisions at age 50. It is powerful to say, “Thanks for the suggestion, but… no thanks.” We have recently declined traveling to a study 4-hours away, more testing, and medications that isn’t absolutely necessary. It is liberating to realize that we can at least control that. “Good for you, but not for us.”

    Like

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