I don’t know who needs to hear this today, but you are not a bad person.
People ask me frequently if they are bad people.
I find it strange that anyone would think I had the moral authority to categorize folks as good or bad.
Am I bad person because I dread visiting Mom at the nursing home? Am I bad a person because I keep losing my patience when my husband asks the same question? Am I bad person because I don’t think I can keep Dad at home any longer?
Dementia. It’s complicated. It brings about complicated emotions.
You can love your Mom AND dread visiting her at the nursing home.
You can enjoy being around your husband AND get annoyed by his constant questions.
You can be there for your Dad AND assist in placing him in a memory care community.
The other day someone said to me, “I’ve a little grateful for COVID because I haven’t had to see my grandma decline in the last year.”
She followed that up with, “I’m probably a bad person.”
But she’s not a bad person.
She also hates COVID because of the time she’s lost with her grandma…in spite of being grateful that it’s spared her some daily pain. It can be both.
If you find yourself being angry toward your loved one with dementia, keep in mind that you probably got angry with them from time to time before dementia. And it’s not that you don’t care about them. It’s that you need to develop new coping skills. And, no, you are not a bad person because you get angry with your loved one with dementia.
I am not Suzy Sunshine. And I am not a fan of toxic positivity. I don’t go around telling people to “be positive” or “just smile.” The other day I saw a bumper sticker that said “Positive vibes only.” Sigh.
No matter what people say on Instagram, no one is positive all the time. I believe that some of us have to work harder to be positive than others. Perhaps that’s why you’ll find this is a popular self-help book category. Being positivity is a great place to be.
But stop beating yourself up about negative emotions. Negative emotions are normal. A typical person feels a wide range of emotions, and they should be allowed to experience all of them without guilt or shame.
A particular experience that occurred almost 20 years ago has always stuck with me. It wasn’t until recently that I could verbalize why it troubled me so much…
I was volunteering for a hospice in Kansas City. I stayed with an older woman with brain cancer while her husband went to run some errands. He returned from his outing and offered me a soda. We sat and talked for a while.
He told me that his wife had perhaps 2-3 weeks left. She was often in pain, and he struggled with frequent panic attacks. She was no longer able to communicate verbally and hadn’t been out of bed for several days.
A neighbor stopped over. I shall call this neighbor Suzy Sunshine. Suzy started by talking about a new cancer treatment she’d read about online. She wasn’t sure if it worked for brain cancer but there was this doctor on the West coast… The husband filled her in on how his wife was now in hospice. The focus was on pain control, and he anticipated she would only be around a few more weeks.
Suzy responded, “Don’t give up.” Of course, she was well-meaning, but it came across as so dismissive.
She talked a bit about the power of positive thinking. Maybe…she suggested…he could change her outcome if he started putting out positive vibes. Next came a sales pitch for essential oils. She didn’t sell them, but a friend did. The woman finally left.
The husband turned to me and said, “Maybe I’m a bad person but I just want this to be over as soon as possible for her.”
Nope. Not a bad person. In fact, a really good person.
Where do we get this idea that we have to be 100% positivity and all sunshine and rainbows all the time to be a good person? What if we allow ourselves to be realistic? Authentic? Genuine? What if we just let ourselves be…human?
You are allowed to be annoyed. Angry. Frustrated. Fearful. Disgusted. You name it.
You do not have to hide these feelings. You don’t have to let others shame you for them. When you are in a tough situation, your emotions often pull a quick change.
When I’m going through something tough, my self-talk is sometimes a bit like this: I’m okay. No, now I am not okay. Why am I feeling this? Now I feel strong. I will get through this. I want to cry. I want to be alone. Where is everyone? Why isn’t everyone checking on me? I wish everyone would back off. This is something I can handle. No, I don’t think I can handle this. (And that’s like two minutes in my head.)
It’s not even like you have good days and bad days. You have good minutes and bad minutes. And even your emotions during those minutes can be a rollercoaster.
You are not a bad person for feeling these emotions. You are not a bad person because you’re not always positive. You are not a bad person for being genuine.
You are not a bad person.
Oh, but yes!! It IS hard, and some days are worse than others. Thanks for the confirmation that we’re not bad just because we get angry/short of patience with our loved ones. Sometimes, it’s just the way it is, not good and not bad, it just IS. Blessings to you.
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Thank you, Elaine. Spot on, as always.
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Yes, timely as I made a tearful confession my grief group this week That although I was dedicated to last effort; that yes, I wanted his dementia struggle to be over – for him, for me, for us. I also identified heavily with the toggling shifting mind, constant adrenaline drip living that goes on 24/7. Only now nine months after my husbands passing am I occasionally getting relief from that state of mind.
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Elaine,
This was a great post! As someone “Living Well” with 2 types of Dementia (Alzheimer’s and Vascular Dementia) I see how caring for me affects Maureen . and it’s not always sunshine and daisies.
When I slip into my fog, whether it’s for minute or all day, I know it takes it’s toll on Maureen. I’m sure she wants to run away sometimes. and if the roles were reversed, I would probably think the same. The one thing she does is to treat me as she always does. She cuts me no slack (that I know of), asks me to assist her with a project, proof read something or, as she puts it, makes something up for me to do. I applaud her for what she does for it helps my fog to drift away.
I’m sure you’ve heard the remark, “Care Partners are often overlooked and are seldom thanked.” There are no rights or wrongs, it’s what they have leaned to do through trial and error. This is why when I come out of my fog, I ask Maureen if I did or said something that hurt her feelings. She’s honest with me and tells me what transpired. I am so lucky and honored to have Maureen by my side as we both walk along “OUR” Dementia Journey.
Thanks for posting this, Elaine!
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Thank you Elaine. I have felt many emotions this year. My Mum is bed bound and in a care home. She has LBD. I have not been allowed to see her at all for nearly 12 months. I feel angry and full of despair. I skype Mum 3 times per week and dread each session as I have no idea what she will be like and if she will recognise me. The carer with her has to facilitate the session and my Mum’s response is very dependent on the carer. Some are very helpful and try hard whilst others sit in silence whilst I try hard to engage with Mum. I love my Mum but hate this dreadful disease.
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I think you’ve been inside my head, Elaine. You really hit the nail on its head with this post. Another win!
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