Some of the thoughts you have as a caregiver feel too shameful to tell anyone. You’d never say them to your family, your friends, or even your doctor.
Plenty of caregivers do tell me, though. They wait until we’re alone, or they send an anonymous email, and they ask whether this makes them a terrible person.
It doesn’t. These are some of the most normal dementia caregiver feelings there are, and once you know how common they are, they lose a lot of their power.
There Is No Judgment Here
What’s right for you might not be right for another Careblazer. A different loved one, a different home, different support systems, different histories, different personalities.
It does no good to judge someone through your eyes when you aren’t living their life. Just like we don’t like it when other people judge us.
Some of these are sensitive. They’re things people don’t like to admit. That’s exactly why it matters that you know they’re normal.
1. Intimacy With a Spouse With Dementia: Wanting It, or Not Wanting It at All
Let’s talk about sex.
People pull me aside about this one all the time. What do they do when their loved one still wants physical intimacy with them?
There are ethical things to consider here, for sure. But what I want to share is what Careblazers actually tell me.
Some of them absolutely do want to have sex with their loved one. They want that physical intimacy. They ask me how to keep it going, and how to work through the physical challenges. Nothing wrong with that.
And I talk to just as many Careblazers who want nothing to do with their loved one physically. The relationship has shifted and changed so much that they can’t see their loved one that way anymore. Their loved one feels more like a patient, someone they care for. The spousal feelings are gone.
Both ends of the spectrum. Both are normal. Both are okay. Neither needs judgment, from you toward yourself or from anyone else.
2. Exhausted Even After Memory Care Placement
When someone with dementia lives in memory care, a group home, or a separate unit on the property with 24/7 care, it’s easy to think the caregiver shouldn’t really be exhausted anymore. They have support. They have services.
But let me tell you how many people come to me for help because they are utterly exhausted by placement.
First there’s finding a good placement and good care options. Figuring out how to afford it. Making sure your loved one will be accepted. Helping them adjust. Making sure the staff know how to interact with your loved one.
So many people tell me they’re spending hundreds of thousands of dollars for this level of care, and the staff still call the family regularly. “We need your help. We don’t know how to handle this. Your loved one doesn’t want to bathe or shower. We walk in, they say no, so we walk away.”
All of a sudden you’re still a caregiver. And now you’re also an administrator and an advocate, trying to make sure your loved one gets the care and attention they need while you aren’t there 24/7.
It’s exhausting, nerve-wracking and worrying, all at once.
Caring for a loved one with dementia is exhausting whether you’re doing it yourself at home or they’re living somewhere else. I wrote more about why that tiredness can hit even after a good visit in why you’re still exhausted after memory care placement.
3. Wishing Your Loved One Wouldn’t Live Much Longer
This one is hard. Resentment, followed by guilt, for not really wanting them to live any longer.
A lot of Careblazers tell me this. Living longer means suffering longer. Not just the Careblazer’s suffering, but the suffering of the person with dementia, who is having such a hard time living their life. And the longer they stay alive, the worse it gets.
Saying that out loud feels like the opposite of anything a human should ever want to say. Usually to people who have never had a loved one with dementia, especially in the severe stages.
If you’ve had thoughts like that, so many caregivers have had them too. It’s one of the thoughts I wrote about in 4 unspoken struggles of dementia caregiving.
Having a Thought Doesn’t Mean You’ll Act on It
Just because you have a thought doesn’t mean you’re going to do anything to make it happen.
Our thoughts don’t say anything about who we are as human beings. They just mean we’re human. We have thousands of thoughts every day.
When you’re stressed out, overwhelmed and tired, and things are really difficult, it makes sense that sometimes you’d have thoughts or daydreams about a time when you’re no longer caregiving. A time when your loved one no longer needs this kind of help and care.
4. Wanting a Partner Again While Caring for Your Spouse
Speaking of guilt.
Many Careblazers pull me aside to talk about wishes they have for themselves that don’t include their loved one, because their loved one isn’t able to do it anymore.
One comes up a lot, and always in private. Thoughts and fantasies about sharing their life with another person. Having another partner. Not necessarily in a physical way. Maybe an intimate relationship that isn’t physical at all. Being able to have a conversation with somebody again. A partnership. An intellectual conversation.
Many Careblazers are missing that piece of their loved one, and they want it. So they start imagining having it with somebody else, and then they feel incredible guilt.
This is where I get a lot of comments saying, “This is horrible and not okay.”
Careblazer, having a thought doesn’t mean the person goes and does it. And even if they did, that’s their values and their personal life. We don’t all come from the same backgrounds and belief systems. Again, no judgment here.
If you’re craving a deeper, intimate relationship with somebody now that your loved one can’t give that to you, that is a very common experience. Nothing is wrong with you, and it doesn’t mean you’re a horrible person.
5. Feeling Grossed Out by Dementia Care
This one I personally struggled with a lot when I was caring for both of my parents. Many caregivers are grossed out and disgusted by the care.
Changing your loved one’s briefs. Taking care of wounds. Less than ideal hygiene. Overgrown toenails. Feet, teeth, food. There’s a lot the person with dementia is going to struggle with physically, and a lot of Careblazers who have never been in a caregiving role before get grossed out by it.
That does not mean you show your disgust. We still give dignified care. You can still care beautifully and lovingly and have these very normal, natural human reactions.
Nothing is wrong with you.
6. Resentment Toward Family Who Don’t Help
This last one probably gets talked about out loud more than any of the others. Resentment and anger toward the family members and friends who aren’t there the way you wish they were.
Maybe they live close by and don’t come over to offer help. They don’t drop off food. They don’t run errands for you. They don’t check on you. Or they only ask how the person with dementia is doing, and they kind of forget you.
There’s a lot of emotion toward the people in your life who aren’t showing up the way you wish they would.
I could do a whole other video on asking people for help. But that’s not the point here. The point is that this is one of the things that doesn’t get talked about enough, and people carry a lot of shame about it.
These Feelings Don’t Make You a Bad Caregiver
Every one of these is something people talk to me about all the time. They make people feel like horrible people, and they aren’t.
Careblazer, you’re doing great, even though it doesn’t feel that way.
If You Want the Book
If you haven’t ordered The Dementia Care Toolkit yet, it comes with free resources on the website too, including a workbook that goes along with it and a private video from me to you. You can order your copy here.
A Place to Say It Out Loud
Thoughts like these get lighter once you’ve said them to people who are living it too. Inside the Care Collective, that happens every week in our live support rooms, alongside weekly live Q&As and a library you can use whenever it fits your day. You can learn more here.
