What comments from others are the most helpful to you as a caregiver? Which comments really get under your skin and make you want to scream?
My caregiver days are behind me. Some people really did say comforting words to me and they were appreciated.
Other phrases drove me up a wall. It seems like we often hear more of these than the wonderful comments. Do you agree?
Share what you feel are the most positive comments and the most negative ones.
I appreciated hearing others who had been or are caregivers simply say that they knew it was difficult and exhausting or share a funny story with me. I appreciated when nurses and doctors appreciated me as a caregiver and were encouraging with kind words. I appreciated when someone offered to place mom’s walker in the back seat or trunk for me, just little gestures that are kind.
I wasn’t crazy about people telling me that I was blessed to have mom for so long or that I was doing ‘God’s work.’ Nothing against God but for some reason this comment didn’t sit well with me or did not comfort me. Or another one was that there would be a ‘special place in heaven’ for me.
Anyone else feel the way I did about these remarks?
Maybe by posting our comments we can promote more positive comments and help people to see the ones that perhaps are well meaning but are hurtful to some of us.
Thanks for sharing.
I'm struggling to find something that has been said that has been helpful. Sometimes having someone just listen without judgement is helpful. I need to have the "safe space" to say the hard things. I'm generally an upbeat and funny person and make a lot of jokes about my situation but sometimes I just need to not put on the 'act' and be able to be honest and have people respond without judgement.
I get frustrated by people saying "You are so lucky to have your mom." "I'd give anything to have my mom and she would live with me, I'd never put her in a "home". I know the intentions are good and these are probably people who lost their mom's at a young age, a terrible disease or they feel guilty for being crappy kids. Fortunately, anyone who knows my mom and the length of time this has gone on realizes what a mess this is.
I feel as you do about the things you mentioned, yes. I am also frustrated by the words "duty" and "guilt" and "obligation". It is very painful to see people concerned about what "everyone will think of me if.....". I am frustrated by people who proclaim themselves as having been abused for a lifetime now believing they must care for their abusers because they have been well trained to believe they must.
I am frustrated by our "systems" (here but honestly worldwide) that sometimes seems to me to provide so little honest help and guidance for people trying to care for their elders.
And worst of all I am frustrated that all of this world seems so "hidden" until you enter through its doors. There are people suffering mentally, physically, financially behind hidden closed doors. There is so little congregating together in villages to help one another with care and respite and knowledge. I guess we have kind of lost "community" in this country. I am an atheist, so never was a congregant, but I will say I think that Churches used to provide something we are losing in the world of friendship by text, and that is community that was there to help when there was need.
What a great questions you asked.
I actually had to stop speaking to a friend of mine on the phone for awhile because she made that unnerving comment every time we spoke.
She constantly reminded me that my parents took care of me. Here’s the thing. We end up caring for them far longer than they spent raising us.
We outgrew our diapers! We are changing theirs. It really is a dumb thing to say. Well, not a fair comparison.
I stopped answering her calls because all she did was ask about mom and not me. I knew that she meant well but I felt invisible. It’s kind of weird.
I did fix that. She called and said, “How’s your mom?” I said, “Thanks for asking, I’m fine, just tired.” She paused, then said, “I asked about your mom.” Again I said, “I didn’t sleep last night and I am worn out.” One more time she said, “Did you hear me? How is your mother?” I finally told her that I was aware of what she said but I would like someone to ask how I am sometimes.
Did she understand? Nope! She continued to start off every conversation with, “How is your mom?”
If I said mom kept me up she would say, “Oh your poor mom!” Once I said, “Yes, I feel for mom but I am exhausted and it would be nice if you showed compassion for me too.”
She never did get it. But if her kids drove her crazy I showed empathy to her. I should have said, “Oh, your poor daughter!”
I was in that FOG (Fear, Obligation and Guilt) for far too long. I would like to once again express my deepest gratitude to you and many others who gently kicked me in the butt to help me see it. I appreciate it so very much.
It truly took a not so happy ending, to let go of realizing that not all of us will ever have the ‘fairytale’ ending that we desired. I always felt that I could do it all. The truth is I couldn’t without burning out and sacrificing everything.
Oh, I knew that I was completely miserable but pressed on continuing to move in the wrong direction. I was blind. Maybe I had to get lost to find my way back. What’s the old saying? “Some of us have to learn the hard way.” Keep spreading the word to other caregivers and hopefully sooner or later it will be heard when people are ready to hear it. It’s planting a seed and patiently waiting for it to grow.
What does annoy me, are responses that clearly show that the responder did not take the time to read the post. My mom is struggling with ALZ, and I have some folks who respond to the fact that she is 90, without reading her current condition! They might post something like 'have you asked her such and such?'. Yes I can ask, but she has no understanding in most cases of what we are asking, and she has no comprehension of the consequences of her response. Simple example, if I ask her what she wants to drink, she will say a classic coke, forgetting that she is diabetic. Bottom line, I wish people would read the entire initial post, and preferably read existing responses, and then post their response, even if it only to say, "I agree with Bob!".
P.S. Also agree with Alva in regards to the lack of support and understanding of people caught in this nightmarish maze of a healthcare system for the elderly.
1. Have no concept whatsoever of details involved in estate/trust management, or in preparing a house for sale;
2. Those who seem to think managing two houses is simple, and can't comprehend why things can't be done when THEY think it appropriate (such as January, for cleaning out items in the yard.)
3. a. Those who never helped but pretended they did, and
b. Those who want to "help" now, and want to be paid in personal items.
4. Those who are nosey.
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1. I've found that finding good contractors, appropriate for specific tasks, is challenging. Perhaps good intentioned people don't understand that I don't need a contractor or estate sale company to dispose of household items. I can easily handle towels and pillow cases myself, thank you.
I need a contractor for heavy duty work, like moving old appliances and more up from a basement to a staging area outside or in a garage. And why should I waste money paying someone to sort household items for an estate sale (no offense to those who choose this option though) when the better choice for me is to donate to people in need?
2. Someone who hasn't managed an estate or trust and has no idea of the paperwork and time involved, or the complexities of tax issues for investments. It isn't just a matter of disposal; asset management is involved, and given that we're teetering on the brink of a recession, there are additional asset protection issues in play.
3. a. What I would like to say to the fake helpers isn't appropriate for public posting. These people were never involved when help was needed, but now somehow they've morphed into people beaming of their alleged contributions and expressing if not pushing to "help" clean out the house.
But calling them out on their misguided perceptions solves nothing, and is really a waste of time. Some people need to "live in their fantasies." And others see what they can get for their valuable time and assistance.
b. It's amazing how many people feel qualified to help, and pretend to be sincere. Thus far I've found only a few who offer sincerely; others have their eyes on what they're going to take for their help. "I'd LOVE to have one of those", or " what are you planning to do with x, y and z?" are clues that they expect handouts.
This would bother me except that what they want are usually handmade heirlooms, or much too expensive to donate. Thus far I've been asked for hand made Christmas trees, and collectibles, one of which is worth several thousand dollars.
4. Two kinds of nosey people; (a) estate management and (b) house sale.
"When do you think you'll be selling/disposing of/giving away....(x - z) is a familiar question, or (b) I saw some flowers I liked and thought I'd dig them up." (Seriously!) "I'd like to have x, y, and z from your father's house."
(b) "How much are you selling the house for", or "Can I see the inside of the house?" These are prefaced by alleged interest in buying, w/o having any concept of comparables, or what the house is worth. One neighbor even scurried up to the shed and tried to open the door w/o even asking if he could see it, then he did the same with the house. Obviously I keep all the doors locked when I'm working there.
At least I no longer have to deal with the people telling me how to manage caregiving, or asking why I haven't done x, y or z, or "suggesting" how to handle issues of which they have absolutely no comprehension.
The only consoling ones are those who've gone through similar situations, the ones who've taken care of parents now deceased, and who know how challenging it is.
But I extend a sincerely, and grateful thanks to those who paid for our meals, and helped when I was struggling with getting Dad and his equipment in and out of my small car.
It’s crazy how some people act. It’s mind boggling.
Hugs! I hope things get better for you soon.