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Updated January 05, 2015.
Caring for someone with Alzheimer's or another type of dementia? That places you in your own special cohort of caregivers- not because your calling as a dementia caregiver is any higher than another type of caregiver, but because it is often different than the experience of other caregivers.
Here are 7 things to know about being a caregiver for someone with dementia:
1. It's heartbreaking.
Watching illness and disease rob someone of their health is so hard, especially when it strikes you that you can't just fix it or make it better.
But watching someone slowly lose bits of themselves to dementia is a different level of heartbreak.
2. It's exhausting.
If you're caring for a loved one at home, you're tired. It's a fact. Being on duty or on-call non-stop is exhausting, especially if your family member is shadowing you everywhere you go and you don't get a moment's peace.
3. It's rewarding.
The joy that you derive from a breakthrough in a certain area is so rich, whether it's finally figuring out a successful technique for getting dressed in the morning without a battle, the moment when she surprises you by calling you by name for the first time in months or the gratefulness you see in her eyes when she sees you coming from across the room. No, it's not easy, but for many caregivers, it's rewarding and it's an honor to be able to do this meaningful work for their loved ones.
- Read more: 10 Things NOT to Say to Caregivers
4. It's scary.
Physical decline and pain are scary, but so is the process of dementia. Memory loss is hard, but dementia also can bring personality changes, paranoia, anger, combativeness, wandering, mood changes and verbal aggression. And often, it's directed at you, the caregiver. Not knowing what's next or how to help can be very scary.
- Read more: What to Do When Grandma's Not Nice
5. It's humbling.
Maybe you're someone who's a problem solver, a fixer or a peacemaker. Maybe you've had success in your professional life or always been able to remain calm in crises. Perhaps your home has generally been a happy place, largely due to your ability to juggle many things simultaneously. Whatever your strengths have been, chances are that as a dementia caregiver, you may have had several opportunities where those strengths have disappeared and you're left feeling defeated. This may include the frustration of not being able to fix things no matter how hard you try, the realization that you need to ask someone else for help instead of being the one who is the helper, the tears or weeping that result from a particularly difficult day, or the loss of your temper at your loved one after he fights you about taking a bath. It can just be a very hard and humbling journey.
6. It's lonely.
We've all heard the phrase, "You're not alone." I've said it, support groups have said it, and international dementia resources have said it. And it's true. It's a great reminder that others are walking the same path and you're not the first or only one to experience these challenges. However, even with that knowledge, it can still be lonely when you're not able to go out with other couples anymore, when your friends stop visiting because they don't know what to say, when you're so tired you can't summon the energy to connect with others, and when you miss the companionship of the one you're caring for- even while you're with him.
7. It provokes gratitude.
Yes, it's hard, but watching the persistence of people with dementia who continue to take each day as it comes can remind us to be grateful for the little things of life, as well as for the chance to spend time with our loved ones.
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