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“Sometimes having to accept help is harder than giving it.”
For the worn out family caregivers reading this, there might be head shaking in response to this statement; others might be nodding in agreement. The truth is, it’s more common for people to say no, they are fine, thank you very much, and don’t need any extra help…except for you to take them to the doctor next Tuesday, pick up a few essentials from the grocery store on your way home from work, and much more. Yet if you were to suggest they need help, maybe even hiring someone to assist them around the house, they are likely to say they don’t need any help.
Just the word “help” can offend some people, even if the suggestion is for a familiar and trustworthy loved one to pitch in. Once people have gotten used to living independently, it can be very challenging—and humbling—to ask for and accept assistance with their daily activities.
Who’s In the Driver’s Seat?
When a loved one begins to struggle with living independently either because of age or illness, it can be tempting to rush in and do things for them, or tell them what they need. Before acting on that impulse, hit pause.
Even if your loved one is your same-age spouse or your much older-than-you parent, it is still their life. The best approach is to ensure this person that they are very much in the driver’s seat and you are not taking over to dictate what is best. No one wants to feel like their life has been taken from them, even if done so in a well-meaning effort.
Rather than becoming a caregiver, think about being a care partner so that you are both engaged in this new relationship dynamic.
Listen, Don’t Tell
Assuming your loved one is well enough to communicate with you, start a conversation about the future. Rather than just telling them that what you think they need, begin with a question asking for their thoughts, feelings or opinions. There are a few prompts in this guide.
The goal should be to create plans based on their preferences or to have “person-directed care” that is rooted in their individual likes and dislikes. While limitations might exist or develop, when possible this is a good place to start so that they get the assistance needed rather than clam up.
It might be better if the message doesn’t come from you even so involve a health care provider who can make suggestions from a position of authority.
A person’s ability to process and accept some information may depend on their current well-being; for some people living with dementia, the illness can make it a challenge for them to comprehend, much less accept these messages regardless of the source or tactic.
Even if someone cannot articulate that they feel embarrassed or afraid because they need help, keep in mind that it’s likely they do feel this way and therefore be sensitive and gentle as you help them make adjustments to live a supported independent life.
As difficult as it might be to have these conversations or even to find the resources to be a family caregiver, keep in mind that there is some degree of difficulty for the person you are helping.
Whatever the situation today, care needs will change over time as well-being fluctuates so know that there will be on-going discussion and adjustments for both caregiver and care receiver.
Happy to find this URL. Need some guidence
My family has been facing these struggles for some time now. It is most difficult and advice/perspective is greayly appreciated.
The bottom line seems to be still getting what caregivers want in the end. Of course try a variety of persuasions. But at some point, parents should not be made to do anything if they're dead set against it. They might not be 'confused' as much as in 'control' of the quality of their lives, even if they seem to disagree with what makes sense to outsiders.
If every dementia patient was left to their own devices they would choose to take a walk every morning and have the police bring them home......take a bath without water......put a sweat shirt on for pant, pull it up half way so they walk funny......climb in the car through the hatch.....take the groceries out of the bag after the check out and run them through again......drink everyone's drinks.....poop in the tub and pee in the furnace register....drive without license and go looking for a job when he does not know his name and can not write. I understand the need to keep your independence as long as possible and be treated with respect but when a person is no longer able to meet their own basic needs and unwilling to except help.....you have a problem
My husband has mild dementia and your article was very helpful. This is a trying time in our life,and sometimes I lose patience with him. I hate to do that,and it causes me to feel a lot of guilt. I also cry sometimes when I'm alone. I feel so sad !
Very good advice. Being careful to respect your loved one and never boss them, or tell them what to do is important. I know it's hard. I'm there. It can be done, but like you say, lead then, ask questions. Put yourself in their place because one day you might be.
please read and go to the Lets Talk guide (which I think I saved in documents.....
My husband was an alcoholic and abusive to me long before his stroke. He refused to hire help for himself after he got sick. I had to do everything he needed when he was immobile for 9 months while enduring some of the worse abuse he could dish out. He would not let me hire anyone and I had no access to his funds. If I had, I'd have gone ahead and hired someone anyway. When he started drinking again and brought guns into our home again after I'd gotten rid of them on doctor's orders, I left. He had shot the gun at me before. I do not feel one bit of guilt for divorcing him. If you have a spouse as your built-in caregiver, you should be cooperative, not be threatening, and follow doctors orders. No "plan" was possible with my husband. He would not hear of it. Since my experience I've learned of many more caregivers who are treated badly. I now believe that more caregivers should just walk out. It is sometimes just too much to bear.
I don't agree. Why would you make a person feel like they are still in the drivers seat when they are no longer capable. Seems disingenuous to me. Believe a loved one is more apt to accept help if they know they need it. I think they need to be assured that there is no need to be embarrassed that they help and it would be easier for both sides. C
Thank you for this URL. My sister and I spearhead Moms care, ever so delicately. It produces positive responses from her. Difficult times wane and ebb, but I consider ourselves to be very blessed to be part of her journey.
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