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For the last 9 months, I moved in with my parents. Not permanently, (I have my own condo) just to help caretake my disabled Mom. It's been an extremely demanding/challenging passage, as everyone on this forum is intimately aware. My mother was just accepted for placement in a very nice SNF, which is a blessing as her needs are great.


My cousin just sent me a text saying she's sure how 'physically and emotionally exhausted I must be.' And that she 'hopes at some point I can 'treat myself to an all-inclusive beach vacation or a spa day. I know that is inconceivable now, but I wish it for you.'


For some reason, I found it really annoying. In this time of caregiving, no one has offered me a single thing except for trite pearls of wisdom (insert eye roll). My brother, who has done nothing at all aside from a call or a visit, hasn't said 'thank you' even once. A simple trinket saying that someone was thinking of me would have been very heart-warming and would have fueled the journey a bit. Or someone asking,'what can I do that might help YOU or the care recipient,' would have given me energy and made me feel less invisible, less hopeless, less like I was drowning, and a feeling that someone actually cared.


Now that I've been through this, and the journey isn't over, now that she's placed and then my father will surely have his own challenges that will fall on me (not my brother), I will definitely be looking for opportunities to acknowledge any caregivers that come across my orbit.


To that end, I'm sending a virtual hug, strength, a thank you, and an acknowledgment to all the caregivers who are in the midst of the journey or are on the other side of their journey. XOXOXOXO


In the meantime:


What could someone do, say, provide to make your caregiving journey more bearable?



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Did it ever occur to you that people are only saying things like 'treat yourself' and 'take care of you' because they're trying to be nice and dont know what else to say?
I know what you mean though. No one ever makes an offer for anything that will actually help someone who is a caregiver. Like the number one thing all caregivers want above everything else.
Time off.
Very rarely do any well-wishers make the offer of giving a caregiver a few hours. They aren't willing to come and babysit a demented elder or even to stay with the caregiver and help them out in the house.
It's basically the same uselessness of 'thoughts and prayers' that get offered when there's a national tragedy.
People want to make themselves feel good and do so by offering kind words.
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Kristen2037 Mar 2023
'It's basically the same uselessness of 'thoughts and prayers' that get offered when there's a national tragedy.'

Yes to ^. The saccharine texts don't help when you're in the trenches.
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Same here! My husband's adult daughters (3) of them all send me the same text message notes (take care of yourself, thank you for all you're doing). One of them stops by for a 1/2 hr visit every couple of weeks, the other maybe once a month and the third hasn't come over at all in 4 months to help and she lives in the same city only minutes away! SMH - Yet, they expect a report almost daily of any changes, news from docs, etc. - I just shake my head & carry on.

My husband needs a lot of assistance (he is terminal) and I do my best to make sure all his needs are met - I do what I gotta do - in other words.

I'm 66 yrs old so it's taking its toll but we can't afford assisted living or any of that - so it's up to me to see this through.

We have Palliative care coming once a month for 10 minutes, Home Health Care Nurse once a week for 10 minutes, PT comes twice a week for 1/2 hour - 4 different doctor visits and now dialysis 3x per week (that just started) so I use that time to catch up on my housework, grocery shop, pay bills, etc.

And in answer to your questions: What can they do to help? Friggin come and stay with their Dad to give me a couple of days off to rest for starters!

My hat is off to every single caregiver in the world having to go through this.

Hang in there! That's all we can do!
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Kristen2037 Mar 2023
I'm sorry that your husband is terminal and that all of this is on your shoulders. It's their Dad - why is it so freaking hard for them to help you in some kind of meaningful way?
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I actually don't find what your cousin wrote to be that annoying. But that's me. However, any trinket from a brother who refuses to help in any way WOULD be annoying. "It's the thought that counts" would not mean anything to me, nor would any thank-you.

Why is your father's decline going to be all on you? Why can't you tell your father and your brother that it's now your brother's turn? And if he doesn't want to become the caregiver, then your father can go to a facility.

From your profile: "My therapist is working with me to realize that I am choosing this situation. I want to help my parents but there seems to be no end in sight. If I knew when that was, decision making would be much easier."

Very important -- why ARE choosing this situation?
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Davenport Mar 2023
In my caregiving situation, I absolutely did NOT choose it. But I'm not going to abandon a being in need, especially if there's no one else to help. I didn't like it one bit, but that's how I'm wired. My older sister evaded and avoided, and felt not one bit of guilt, either about not helping our mom, or about her not helping me. Lucky her.
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This is what someone could say and do: "Hi, I'm here for the next 4-5 hours to help you out." I think some of us here would faint hearing that, if a close friend/family member said that and actually did help. I think I'd start crying.
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Kristen2037 Mar 2023
Imagine!
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For me, not doing any hands on care, but being faced with being POA and Trustee, not knowing much about it, it was the anxiety that got me at first. It was such a help to come here. And to have a support group on FB that was involved with the Lewy's Dementia that was taking my bro down. What helped? This Forum, that, deep breathing, not much, on any given day. Just depended.

I think people mean well. Most of them. I think people also want to say, and some DO, "Why did you take this on?". It was a question in fact I asked myself. And then came to my answer of "For my brother" and moved on.

There are the kinder than kind souls out there who just say, I make a mean lasagna; if I bring one over this week would you eat it? Or deliver a gift card in a pretty envelope saying "Admire you. Know your costs are up. Hope this helps". I have taken to a friend caring for her Mom a gift basket. Full of treats and things I knew she liked.

Truth is, short of saying "Can I sit with Mom while you take the afternoon off? Let me know", I am not sure. And I think sometimes it is just so hard, and we are so anxious or so tired, that it just is what it is.

It's a good question you ask.
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BurntCaregiver Mar 2023
@Alva

"Can I sit with mom while you take the afternoon off? Let me know?"

These are the words every caregiver wants to hear. The number one thing they want is some time away from the person they are taking care of. When person never gets a break, it creates the perfect storm for abuse. I've had to have a word with more than a few husbands and siblings over the years about the family caregiver coming undone. Even when they had outside help coming in. One person never getting time away from the needy care recipient can turn into a bad situation fast.
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The best thing you can do for yourself is have no expectations of anyone. You can’t make people care. I do the best I can for my family, my mom, and my exMIL. I don’t expect any help and I don’t ask for any.
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CaregiverL Mar 2023
KC, that is my attitude too. Nobody helps. Nobody cares. Period. End of story.
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People who haven't been doing the hands-on caregiving work are not going to waltz in and give you some time off because understandably, they don't know what to do, what might be required, or if they could handle a crisis. To them, it's like expecting them to operate heavy machinery without any training.

I do empathize with your situation, but if you don't do some hands-on training with your brother or anyone you want to give you a break, then it isn't realistic to expect them to help. Your cousin was being empathetic, too, and her comment was kind. You can be annoyed, but I think much of your stress and agony is of your own making. If you want/need help, you have to ask for it and TRAIN your assistant/brother.

I did the same thing with my parents also with virtually no assistance from my brother, so I know what you're dealing with.
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BurntCaregiver Mar 2023
@MJ

I must disagree. Most people who are caregivers get a baptism of fire and are thrown into a situation with zero training. Even when they are agency-employed, paid caregivers. I took work with several different care agencies over the years. I never received a moment of training on what to do in a crisis or emergency. Call the office supervisor was all the training a homecare aide receives. I learned from experience how to handle client needs and crises.
An adult offering to watch an elder for a couple of hours really doesn't need any special training. Bringing supper over to a person stuck in the house caregiving and sharing a meal with them doesn't need any training. Then getting up and doing some laundry for them doesn't either. Believe me where there's a person who has to have a caregiver, there is a lot of laundry.
There's also no special training necessary to write a check. If the OP's brother can't give her some time off from caregiving, he can hire someone to. No one should have to carry the whole burden of the caregiving experience.
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What a tone deaf thing to say! We’ll never cure ignorance but I do hope you’ll reply offering her a shift with mom so you can have a break “that’s a great thought but what I could really use from you is help from ____ to ____ on ______. That would be a huge help in recharging me in this long, hard journey of caregiving. How’s that time for you?” You’ll likely hear only the crickets but your point will come through
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Kristen2037 Mar 2023
Thank you!!!!!!!
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Yes to your sentiments! I'm not sure exactly when it hit me, but "take care of yourself" became in my mind "find a way out!" To that end, like you, I found a place for mom. She moved in to the new place last week. No one is going to take care of you but you. No one will rescue you. As you asked, in the meantime while on the caregiving journey, to make the journey more bearable someone might say, let me sit with your mom tomorrow morning while you tour places for mom! Thank you for your post.
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You’re entitled to feel exactly as you do. If anyone works on your nerves terribly and you find it extremely annoying, scream to the top of your lungs if you want to.

I would often wish for a soundproof room to holler, yell, scream, throw something against the wall, jump up and down or just to wail in tears at my difficult circumstances.

My hideout was my shower. I would crank up the water and cry my eyes out so no one could hear me.

Other times I put on music, not ‘soft classical,’ even though I adore classical music, but rather something like Janis Joplin singing, Piece of My Heart!

So, I promise not to say any pacifying crap today.
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Kristen2037 Mar 2023
Me too in the shower!! Thanks for the validation.
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I will say at least she acknowledged that while you need the break you really don't have the time for one. Those that tell you to take a spa day with no thought to how your 'shift' will be covered are the annoying ones. You almost want to be snarky and say " Wow, I never even thought of just dropping everything and taking a cruise. I wonder who will step up while I am gone".
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NeedHelpWithMom Mar 2023
I hated hearing, “You need some ‘Me’ time for yourself. All that comment made me feel like doing was to say, ‘Well, what time are you coming over here to relieve me?’

When I did ask for help, nine times out of ten I didn’t receive it. So, I stopped wasting my breath, time and energy.

I think any caregiver on this forum feels the OP’s pain and has empathy for all others who are struggling.
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Hi Kristen,

This is a great question that you've posed here, thank you. It's a real skill I think to be able to offer meaningful words. It's takes practice and intention. One of the best when I was venting to a relatively new friend were these I've copied and pasted here:

"I am available to be an ear for listening (this week and generally), if that would be supportive. I could 1. quietly listen and offer no comments, 2. listen and verbally affirm your feelings, 3. listen, affirm your feelings, and offer advice if any comes to mind, or 4. another structure of conversation that would be more supportive to you. No pressure on any of these!"

Another was from my neighbor who I also don't know very well she wrote" Oh no! Wow, I'm so sorry to hear about your mother. Would you like some company, a listening ear, or food? What do you need right now? "

One of the least helpful was "please don't forget to take care of yourself " like oops I forgot to eat or exercise or soak in a tub! Doesn't mean she doesn't love me, but it wasn't helpful or what I really needed to hear. I know she cares deeply for me.

The wishes for an all inclusive trip or spa day also assume that you have the money to do this as well as the time and mental energy!

It's all very hard and I wish for everyone here a peaceful moment or two!
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Kristen2037 Mar 2023
Love these suggestions!
Your neighbor was so insightful because she knew to offer some specific ideas vs. 'let me know if you need anything!'
I also think you bring up a good point about listening, commenting, advice, affirmation bc sometimes something like advice is the last thing needed.
It really is such a delicate balance.

I'm sure my frustration tolerance is 0 and I wouldn't normally be so triggered by her comments.

But let me put it this way - I would never tell someone I wished a spa day for them, I would instead send a GC for a mani/pedi. And BTW, I would love that, in fact! I don't expect anything from anyone, but the thoughts, prayers, and wishes really ring hollow sometimes.
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Why do you need to take care of Dad? My Dad was Curmudgeon.
And spoiled by my mother. I told my brothers never to expect me to care for him. It was going to be them or a nursing home. Really he would probably be happy in a NH, someone new to tell his stories too. And, he did better in Hospitals and Rehabs. His B/P went down.
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"...now that she's placed and then my father will surely have his own challenges that will fall on me (not my brother)"

Why you?
Your brother has the right to refuse, why not you?
If your dad didn't have any children, where would he end up?
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Davenport Mar 2023
In response to 'your brother has the right to refuse, why not you?', I'd say that when it comes to the one and only person left to be the caregiver, it's a helluva lot harder to simply refuse; for many, there is no luxury of choice; the brother stuck the poster with caregiving. It's like musical chairs, if you're the last one without a chair, you lose. Totally unfair, for sure. But for many, it's an awful reality.
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They could ask me how I’m doing. And not promise my LO to bring other family members to visit because “they just love him!” He doesn’t even remember who they are, and that makes more for me to do as well as many questions to answer over and over and over and - anyway. Ask me first! And accept what I say without rolling eyes till they almost pop out of their sockets!
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They can’t say anything..it’s the doing that they are not providing. They don’t offer to substitute caregiver for you. Or to get someone to substitute & take you out for lunch! Why is it that we can think what we’d like, but not all the selfish ones? They just don’t want to be bothered. Can you have your father placed in same facility? Or one nearby if his needs aren’t as great?
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"A simple trinket saying that someone was thinking of me would have been very heart-warming and would have fueled the journey a bit."

I'm just entering the really difficult phases of caregiving. Hubs still has plenty of lots, but this last week took me to the ground when I was found COVID positive. Your comment here really hit home for me. For a couple of days, not one of my co-workers/friends (I have little family - my job IS my family) reached out to me just to say hi. Just to say they were looking forward to my return. Just a virtual hug. It would have helped immensely. But instead, I've felt alone...isolated...unimportant. Like a pariah.

I guess, and I hope I'm wrong, it's what I can expect as my attention needs to be more and more focused at home.

In short, I'm just agreeing that a simple smiley goes a long way and really shouldn't be that hard to send when things are hard.
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Fawnby Aug 2023
A couple of days. Yes, it does get worse. Way worse. I’m sorry, and I know how it is.
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Bring food. Offer to stay with my LO so I can go out! Help with things such as replacing the broken porch door handle or help me move things to the attic. And if sick, don’t visit us. Getting sick with “just a cold” could wreak havoc with our health. This is my second response to this post, and I keep thinking of things to add or repeat.
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I certainly do commiserate with your situation. Mine is similar. I simply remind myself of all those poor souls who have it much tougher than I and still manage. We certainly can't console ourselves by saying things will sometime be better... I am 83 and I only expect them to get worse! But only we can assess our situation and determine the things we can and must do to care for our charges! To add to my feelings of helplessness is a tremendous feeling of loneliness. The partner I had for 65 years is now a stranger that I am responsible for. My friends now are FaceBook acquaintances and I miss having a great big hug and "I love you" now and then!
Good luck in your travails!🥰
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NeedHelpWithMom Aug 2023
OldArkie,

I know that it’s not the same as receiving that special hug, but I am sending a million hugs your way!
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Aaaand.....only a few days from the thread timing out there is a new post bringing back to life.
I really do think that inactive threads should be closed sooner.
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NeedHelpWithMom Aug 2023
cw,

I have never understood how the questions are presented. Some questions never seem to leave the rotation.
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News flash, most people who haven’t been caregivers are clueless about the demands of caregiving and too self absorbed to even think of how this is impacting you physically, emotionally, financially. Your cousin meant well, leave it at that,
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NeedHelpWithMom Aug 2023
So true! Totally clueless.
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