Caregiver Stress: The Fear Factor
By Paula Spencer Scott, Caring.com senior editor
Does worry about your loved one's reaction ever prevent you from doing something as a caregiver on his or her behalf? Being “afraid of Mom,” for example, sounds crazy on the face of it (fear, at our age?!) and yet we all know old relationship patterns have deep and lasting grooves. And some care-ees have strong personalities! Hello, caregiver stress.
Take this case: A caregiver recently described to me the stealth and subterfuge involved in cleaning her parents’ house. Her 85-year-old mom, who’s beginning to show signs of dementia, refuses to have any housekeeping help (or any help of any kind, even though she could also use meal prep and yard help, and there's money for it). The burden was falling on Dad, also 85. So Caregiver Daughter drove from Iowa to Chicago to do a deep clean herself while the parents vacationed at a cousin’s. She cleared outdated food from cupboards, threw out old papers and jars, ditched full roach traps, and scrubbed, vacuumed, scrubbed some more.
“But I think I went overboard,” she fretted. “It’s bad enough I threw away old stuff. What if Mom notices the new roach traps and the clean shelf paper I replaced?”
“So you tell her with a wink that the cleaning fairy visited and everybody’s happy,” I say, cavalierly.
“You don’t know my mother!” says Caregiver Daughter, darkly.
“Oh, what can she do about it?”
“She’ll take it out on my Dad! She’ll stop talking to me! I can’t win,” mutters Caregiver Daughter.
She’s not alone in her fear. Any of the following ring a bell?
“I can’t drop off Dad to the Senior Center for activities – he’d never forgive me.”
“When we try to get him to stop driving, he threatens to cut us out of his will….”
“She needs Meals on Wheels but her pride would never allow it….”
“If I hired someone to give Mom a bath, Dad would kill me….”
“We promised we’d never put her in a nursing home….”
Knowing what's needed is one thing. But knowing how the receiver will react stops us cold. And this self-censoring fear is a little-acknowledged source of caregiver stress.
Even with agreeable and reasonable elders, there’s an element of not wanting to rock the boat. Yep -- with a nurse's approval -- I slipped the morphine into my stoic Mom’s coffee without a word during home hospice (after she refused any painkiller but “one Tylenol,” despite obvious pain) rather than insist on it to her face and risk a fuss.
What’s the best course of action when you’re afraid of repercussions? Lifting a page from your adolescent playbook and sneaking behind the person’s back? Continuing to heed All Knowing Mom or Head of Household Husband, even when they’re sick – and wrong? Putting on your best like-it-or-lump-it stern face even when you’re the one who’ll wind up taking the lumps?
It’s stressful to have to be the grownup.
My mother said she couldn't get any help for my dad because "he doesn't want anyone to do anything but me." Well she had to, because after he almost died in the nursing home, he came back home and now has 1-2 caregivers round the clock. Now my mom does none of his care! So where did this come from? This attitude that the situation was impossible, and nobody could do it but her? It was a delusion - mom's delusion, and she is NOT the one with dementia. I kept telling her that he isn't the one who calls the shots anymore. Well anyway now he is doing great. Too bad he had to suffer so badly in order for my mom to agree to accept caregiver support.
aabeth, I am so sorry you are going through this. While my mother-in-law was living with us, I had to repeatedly reinform her that mother had passed over 30 years prior to her moving in with us, that he father had passed over 50 years before and that her husband had passed 15 years earlier. Its hard to have to break their hearts, over and over again, yet something that is going to happen. Each time I told her something like this, she reacted like it was the first time she was learning of their deaths. If it helps, she probably will forget it shortly. Maybe you can find a way to distract her from thinking or dwelling on it?? I know its hard...hang in there! Also, should have replied directly to your earlier posts. When my mother-in-law wouldn't wear her depends, I would simply pull out a hospital chuck (those things placed under people that are bedridden for whatever reason) and place them on whatever furniture she wanted to sit on. I only had to tell her once that if she wouldn't wear them, I had to put these down to protect the furniture, in a gentle tone. For family or visitors to see her sitting on these would have been highly embarrassing to her, so, she chose to wear the depends...most days! ;) I did not have to bring that fact up to her...she was able to figure that out on her own. I hope that helps, and yes, you have my prayers on all you are dealing with now and in the future with your mother. {{hugs}}
Last night I had to tell my Mom that her sister passed away. With family calling all night, (they only call when something happens) I think she forgot what I told her. I know I have to tell her again this morning. It hurts me to do this, I'm try my best to hold it together. This is the hardest part. I just did the same thing in December, when her Brother died. The truth is my worst fear is that when I go in her room each morning I will find her dead. I know I'm morbid but thats my fear. Pray for my Mom and for me to have the strength to do all this.
Journey002 -- "creativity" is a great word to remember,
It seemed like everything was a battle with my mother-in-law...until I developed the notion that she was only functioning with a 5 year old mentality and that if she were my child, I would be insisting on some of these things being done. Just like a child, you find creative ways of getting them to do what you want them to. Pick and choose your battles, some are just not that major of an issue to fight over...others certainly are. With dementia, you cease to be the child and become the parent. Try looking at it that way and see how creative you can be. It definitely helped me in coping with her.
Thanks Paula, I was starting to think it was just me. Nice to know I'm not alone. Good suggestions
This is so true! With the incontinence, we had to replace the underwear with Depends, and said those were his new underwear. Unfortunately, to be a caregiver effectively, you have to develop thick skin. I remember my father-in-law arguing with me about something and I said, jokingly, "I know I can take you on" and, once he new I was serious, he laughed about it andI won that battle. I tried to cherish every moment with him, although many times it was difficult.
aabeth: This is such a big issue! But a lot of the time there's just a mental hump to get over, for us and for them -- having extra protection available can be a relief to the person. And there are so many options now that don't have an 'adult diaper' stigma. You could even try just making some available in her underwear drawer and see what she thinks. Making jokes ("you'll be just like those old movie stars, Mom!") works with most people better than threats. Try searching "incontinence" in the Caring search box -- there are some good expert answers on exactly this question and also a buyer's guide to products.
I need to get mom to wear depends, however, she won't listen, saying she knows how to dress herself. So the other day we go shopping and I notice she had an accident, and she don't even know it. My sister says I should tell her if she doen't listen I will put her in a home, but I can't threaten my mom. What to do?
I have to get mom to wear depends and I don't know how to go about it. She has accidents and don't even know it. We can be walking around the store and I see it on the back of her pants. My sister says I should tell her if she doesn't listen I will put her in a home, I can't threaten my mother. What to do?
Sometimes, you just got to do what you got to do.
Yup. I'm a sneaker too. I have battles over so many things with Mom, from taking her meds to hygiene issues. So anytime I can avoid them by being sneaky and doing things when she's not looking -- I do it.
I sneak in and do things. I am not going to rock the boat at this point in my life. I dont need the stress. I know that sometimes she forgets what happened an hour ago but unfortunately I dont. She forgets that she yelled at me for minutes and tried to pull away from me. Then she doesnt understand why I dont help her or what I am talking about a couple of minutes later. Honesty is not the best policy all of the time.