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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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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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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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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 21, 2023
So true! Totally clueless.
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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 21, 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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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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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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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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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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