By Kara Jacobsen
Being a caregiver for someone with dementia is a deeply emotional journey. In fact, 35% of Alzheimer’s caregivers report their own health has suffered due to care responsibilities.
A few kind words can make someone’s day when they’re dealing with the stress of caregiving. You’d be surprised how a few simple changes in the way you phrase things can make all the difference! Keep reading to find out 10 phrases to avoid – and to start using – to positively influence caregivers.
1. “You should…” This comment can make a caregiver feel judged and defensive. Especially if it comes from people who aren’t intimately involved and don’t understand the critical needs their person with dementia may have. It assumes the caregiver does not know something obvious, or hasn’t already tried what you are suggesting.
Instead: Consider saying, “You’re doing a tremendous job! If you have challenges that you’re trying to solve, I’d be happy to help you brainstorm and research new approaches if that would be helpful. I don’t want to suggest things you’ve already been doing or have ruled out.”
2. “Caregiving was handled very differently when (so and so) had dementia.” No situation is the exact same. We all play different roles interpersonally, have different strengths, relationships, illnesses, abilities and financial situations. This can be especially frustrating when statements like this come from people who really have not been around since the diagnosis.
Instead: Be aware that every situation is unique. Try complimenting the caregiver or validate what they are doing well: “I’m sure caregiving is very difficult and would be a challenge for anyone.”
3. “If it’s hard for you, then why don’t you just put your (mom, spouse, etc.) in a nursing home?” Many people have no idea what that means financially or how complicated it is to advocate for and care for someone who is in a care facility. They might assume a facility takes care of every need, which is simply not accurate. While it’s a good choice for some people, it’s not always feasible or desirable for everyone. And unintentionally, you may be implying that the caregiver is not doing a good enough job.
Instead: “I can see how hard this is for you, and I so appreciate and admire what you are doing. I’d like to help by (specific way of helping).”
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4. “You look really tired; you really need to take care of yourself.” Any person who cares for another person 24/7 would be tired! This comment is not helpful. Most caregivers are aware that they are tired and may be neglecting themselves.
Instead: Help them in practical ways. Offer to cook some healthy meals. Take a night shift so they can have uninterrupted sleep. Gift some exercise classes or a personal trainer who can come to the home. Care for the person with dementia for a few hours so the care partner has more time to take care of themselves.
5. “I just couldn’t do what you’re doing (or I can’t help care for them) because my life is too busy with other responsibilities,” or “You’ve put your life on hold to be a caregiver.” This suggests that the caregiver’s life is not busy and they have all the time in the world to be caregiving. It could also imply that your responsibilities, work, relationships, self-care and activities are more important than theirs.
Instead: “I see that you are rearranging your life and juggling so much to be involved in caregiving. I realize that if I were the caregiver, I would have to rearrange my priorities too” or “I know you are making a lot of changes in your life to care for our mom. I’m going to look at my priorities also and step up to the plate if I’m able to help care for her too.”
6. (In a familial caregiving situation) “There’s always one person in the family who does the caregiving — you’re just that person.” Just because one family member ends up taking on the bulk of caregiving responsibilities, it doesn’t mean it’s right.
Instead: “I think it’s unfair that you are providing the majority of the care for Dad. That must be frustrating. I’d be willing to help you try to find services to supplement the care you provide (and help pay for them if necessary)” or “I feel badly that you are providing more of Mom’s care. Let’s set up a schedule and come up with ways that I can take on more care responsibilities.”
7. “You are a saint,” or “Your reward for caregiving will be in heaven.” Our ultimate reward is precious time spent with our person, knowing we are doing our best for them and being appreciated for what we are doing. Caregivers often feel inadequate, angry and exhausted. When you say things like this (though it may be well-intended) it can make the caregiver feel that they shouldn’t expect support or appreciation now, or suggests they are superhuman and don’t need support.
Instead: “Thank you for what you are doing – it must be very challenging at times, but you keep forging ahead, and I admire you for that. I’d like to do (x, y, and z) to support you.” Surprise a caregiver with a supportive greeting card, gift certificate, present or anything else you can think of that might make them feel appreciated.
8. “Well, at least they’ve (person with dementia) had a long life.” Losing a person at any age is difficult, especially if they are physically present but mentally absent.
Instead: “It’s always painful to watch someone you love suffer or change, or to lose them – at any age. I imagine this is very difficult for you.”
9. “Isn’t caring for your aging parents just like raising children?” Caring for an adult is very different from caring for children – physically and emotionally. It may feel like you are losing them little by little, and it’s a long grieving process. Children are moving toward independence, while the caregiver may be doing everything they can to support their parent so they can remain as independent as possible.
Instead: “I appreciate the way you respect and support your parents as they age, and can understand the challenges of seeing them change over time.”
10. “Just let me know if you need anything,” or “Let me know how I can help.” It’s always nice to offer help, but caregivers are often so overwhelmed and exhausted that it’s hard to think of things you are willing or have the time to do. Caregivers often don’t have the energy to reach out when we need support the most.
Instead: It’s so much more helpful – and seems much more sincere – when people offer specific things they can do. Try: “Could I run some errands for you? Sort your mail? Water your plants? Come and visit with your person? Bring a meal?” or “I’d be happy to come stay with (person living with dementia) for a while so you can have a break. How about next Saturday?”
Alzheimer’s San Diego is here to help! If you or someone you love is dealing with a dementia diagnosis, get free support by calling us at 858.492.4400 and speak with one of our dementia experts who are here to help San Diego County residents and/or those caring for someone living in San Diego County (Spanish speakers available). Also check out our free education classes, social activities, care partner support groups, & more.
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