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?
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.
Yes to ^. The saccharine texts don't help when you're in the trenches.
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!
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?
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.
"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.
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.
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.
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.
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.
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!
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.
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.
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?
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.
Good luck in your travails!🥰
I know that it’s not the same as receiving that special hug, but I am sending a million hugs your way!
I really do think that inactive threads should be closed sooner.
I have never understood how the questions are presented. Some questions never seem to leave the rotation.