Careblazer, we talk a lot about grief in dementia caregiving. Ambiguous loss. Losing someone who is still here.
But I want to get down to specifics: the reasons dementia caregiving is so incredibly painful, so incredibly hard.
I did a 14-day series on the unspoken griefs of dementia care, and these are 13 of them. This is the side of dementia caregiver grief that rarely gets said out loud.
1. Sacrificing So Much, and It Goes Unnoticed
As a Careblazer, you’re sacrificing so much. Your time, your money, your energy.
And for many of you, it goes unnoticed. Unappreciated. You might even get resentment and frustration from your loved one for doing so much, because they don’t think they need the care.
2. Your Support System Starts to Shrink
The support systems in your life, friends and even family, start to shrink as the disease goes on.
For most people, this isn’t a disease that’s over in a couple of months. For many of us, it lasts years. Maybe even decades.
And over that time, as you become less available, more stressed out, and pulled by more demands of caregiving, the people around you start to disappear.
3. No Matter How Well You Care for Them, They Will Decline
No matter how much love and care you give. No matter how carefully you follow every treatment recommendation. No matter if you do everything as well as it can possibly be done…
Your loved one will continue to decline. Your loved one will continue to get worse.
There is no amount of perfect caregiving that can stop the disease from taking its natural course.
That’s the first of the 5 dementia caregiving truths I wish every caregiver knew.
4. Losing the Hopes and Dreams You Had for the Future
Many of our hopes and dreams for the future won’t come to fruition. Or they have to go on the back burner and wait.
Maybe it was a job promotion. A hobby you wanted to pursue. Travel.
Maybe it was the plans you had together with your loved one, to do those things side by side. And then you realize that because of this disease, those things won’t happen. Or won’t happen anytime soon.
5. When Your Home Starts to Look Like a Hospital
This one might seem small. Trivial. Not important.
But with all the ways dementia changes our lives as caregivers, it’s a big one. Many caregivers have told me about it, and then told me they feel guilty for feeling this way.
I’m here to tell you it is so normal.
Your home starts to look less like a home and more like a hospital. The cute throw rugs get taken away because they’re trip hazards. There are absorbent pads on all the furniture to soak up any accidents. Pill boxes and medications everywhere. A Hoyer lift. Adaptive equipment.
Your home starts to look closer to a hospital room than to your sanctuary.
For many people, myself included, home is my place of peace. My place of calm. It’s the place I look forward to going when I’m the most stressed. When dementia starts to take over, that can change for the caregiver.
6. Your Other Relationships Go on the Back Burner
Other relationships that are important to you start to go on the back burner. Maybe they even get a little neglected, and that puts a strain on you and on that other person.
This often happens when you’re caring for a parent. Your spouse is asking, “What about me?” Your children are asking, “What about us?”
And it feels like you can’t satisfy anybody. You’re doing the best you can to care for the person with dementia and to keep the rest of your family happy. Yet nobody’s satisfied, because nobody feels like they’re getting everything they want.
7. Ambiguous Loss: Grieving Someone Who Is Still Here
Most of us are already familiar with this one. It’s what we call ambiguous loss.
With other conditions, a lot of people talk about grief after the person has passed away. In dementia caregiving, the grief can last for years. We’re watching the person with dementia slip away before our eyes, slowly losing the abilities they’ve always had.
I remember watching my dad go from someone who took such great pride in his appearance, his cleanliness and his hygiene, to someone who didn’t care if he was sitting in his own urine. Who didn’t care if his hair had grown out past his ears.
He spent 23 years in the military and took so much pride in how he looked. That was really hard to watch.
Watching your loved one no longer able to have a conversation, no longer able to do the hobbies they’ve always enjoyed… that is a different, heartbreaking level of grief.
8. When Caregiving Gets Easier Because They’ve Gotten Worse
This grief rarely gets talked about.
Caregiving is really hard, and your loved one might do things that feel like resisting, pushing back, or making your caregiving harder.
And here’s a big grief. Many times when dementia caregiving becomes easier, it’s because your loved one just got worse. As the disease progresses, some of those really challenging behaviors can lessen or happen less often.
One Careblazer told me his wife always seemed to resist him and push back. Then all of a sudden he realized, “Wow, it’s easier now. She’s not pushing back so much.”
And then it dawned on him. “Oh. She’s getting worse.”
As things get easier physically for you, they’re getting harder for the person with dementia.
9. Neglecting Your Own Health
This one is more about you.
You’re putting so much time, energy and effort into making sure your loved one gets the best possible care. Taking them to their appointments. Making sure they take their medicine. Trying to get them to eat as well as possible.
And we neglect ourselves. Many times we don’t put ourselves anywhere close to the level of importance we give our loved one with dementia. That means our health is going to suffer.
We’re not taking our own medications or vitamins. We’re not following up with our own doctor’s appointments. We’re so focused on our loved one.
If it feels like you’ve lost track of yourself entirely, I wrote about why dementia caregivers lose their sense of self.
10. Watching Everyone Else Live Their Lives, and Hiding Your Breaks
This one resonated with me a lot when I was caring for my mom and my dad.
Part of it is watching other people get to live out their dreams. Go on vacation. Spend the weekend how they want. Spend the day how they want, even if that day is just going to work and coming home, without having to go care for someone.
It’s like the world gets to live its life while we’re, in some ways, stuck caregiving.
But what I really felt was this. When I did get the chance at something good, some rest, some relaxation, I felt like I had to hide it.
If I got away for a weekend, or spent some time at my cabin, or had a family member come in to watch my loved one so I could have a break… I felt like I almost had to hide it. Like it was something to be ashamed of. Like if I shared it, people might think I wasn’t a good enough caregiver, or that my life wasn’t really that hard.
It sounds strange to say out loud. But I know many of us experience it.
If the guilt about taking a break is the part that sticks, I go through it in how to stop feeling guilty as a dementia caregiver.
11. Always Walking on Eggshells
You never know what’s going to set off your loved one with dementia.
One day they’re totally fine with something you say or do. The next day, or the next moment, they’re not.
So we start to live in this hypervigilant, uneasy state in our own home. Worrying about what the next big argument is going to be about. Worrying about the next thing we’ll do without knowing it that’s going to create a lot of stress.
12. Realizing They Would Never Do the Same for You
Are you ready for this one?
For many people, there’s the grief of realizing that the person they’re caring for, sacrificing for, doing all the hard stuff for, would never do the same thing for them.
That is a hard thing to admit. A hard thing to recognize and acknowledge. It can lead to a lot of resentment. But it’s a reality for many people.
A lot of Careblazers aren’t caring for someone because they know that person would do the same for them in return. For them, it’s something else. Something deeper. And it is heartbreaking.
13. Not Wanting Them to Die, but Not Wanting Them to Suffer
This might be one of the biggest unspoken griefs of all.
You don’t want your loved one to die. But you also don’t want to see them suffer while they’re living.
So you’re constantly torn. You’re not wishing this person would die, but you don’t want them to keep living the way they are either.
You’re stuck in this messy middle, where there’s no ideal outcome.
If one of these is the grief you’re carrying right now, the Care Collective is a loving, supportive community with solutions for whatever challenge you’re facing in caregiving. You’ll meet our dementia experts, and Careblazer members who have been through this with so much grace, love and compassion. You can learn more here.
