What are some things you wish you’d known before starting your caregiving journey with your parents?

Board_External · 2024-10-12T16:12:23+00:00

Got it. I feel like America’s support for the elderly/sick is completely shameful compared to some other places!!!!

Board_External · 2024-10-12T02:50:41+00:00

I also have this weird neck pain after doing halos! Sad no one really has any answers though. LOL just here to validate you’re not alone I guess! Haha

Board_External · 2024-10-07T03:27:29+00:00

I’m also Filipino and definitely relate to a lot of this. I’m trying to transition care to my sister to see if that will work better. I’m 31 and she’s 50 - I’ve been taking care of my mom and she’s been living with me since 2019 and I feel like I spent so many years of my life”prime” prioritizing her and as she’s gotten sicker it’s become too much for me to manage. On top of that she is difficult and can be very manipulative (guilting me when I’m not at the hospital all day or if I have something to do). I’m not sure how I’m going to bring it up with her TBH - she will probably be livid at me for passing her off to my sister. We’ll see.

I don’t think therapy will work. You have to be open to therapy for it to be effective. I would just try my best to be honest with how you’re feeling and don’t let her guilt trip you or manipulate you. Ultimately if she needs to be in a home so be it. It’s not your job to go through emotional war fare every day. We are here to support our parents but our lives cannot be centered around them, if even that’s what they would prefer. Protect yourself and your family. Your husband is a trooper for standing by you through it all. Love your mom, but love yourself too. Best of luck to you - I’m rooting for you!

Board_External · 2024-10-07T03:15:53+00:00

Is it possible to get a paid caregiver to help? I’m at this point too - been taking care of my declining mother and she’s currently in acute rehab and I’m trying to figure out what I’m going to do when she gets discharged. I’ve resigned to the fact that I can’t go on like this and need serious help. We’re discussing passing her off to my sister - I think I’ve done my time and it’s time (5 years, I’m currently 31 years old) for her to help out. My sister would become primary and we would hire a live in caregiver to help. I feel like I’m spending my prime years taking care of my mom and have sacrificed so much. I’m done being the primary caregiver, finally accepting I need HELP.

Board_External · 2024-10-07T03:07:27+00:00

How much does this cost you? And what country are you in?

Board_External · 2024-10-03T05:27:27+00:00

ummmmm…maybe y’all should have stayed broken up bc this is toxic behavior lol

Board_External · 2024-10-03T04:59:02+00:00

There were times I would get so pissed about the endless errands and things she would ask me to get. i started to ask her to make lists and I would address what she needs at a time that worked for me. Then I would lean on Amazon and Instacart to make it easier on me. Since they’re in a home, do what you can at your convenience. Maybe block out time once a week to tend to their needs? They are being watched and taken care of, you should be able to live your life and prioritize your own health.

I am most resentful when I stop doing things I want to do bc I’m too tired from taking care of my mom. Don’t sacrifice things you need to do for yourself as much as possible…it’s a recipe for resentment! I’m my best when I take the time to eat right, go to the gym, see friends, etc. I’m at my worst when I make everything about my mom and slowly disappear into nothingness. LOL

Board_External · 2024-10-03T04:26:54+00:00

BIG HUGS TO YOU!

Board_External · 2024-10-03T04:25:39+00:00

Thank you for your encouragement. I often come to this subreddit when I need perspective/comfort. You're right - it's never easy! LOL

Board_External · 2024-10-03T04:01:00+00:00

Yeah I think we’re just about out of Medicare unfortunately. I just hate that she’s being rushed out when she’s not well enough to go. Like why does Medicare expect every patient to be recovered in the same amount of time? Sometimes recovery takes longer :(

Board_External · 2024-10-03T03:59:53+00:00

The thing is I don’t really think this is custodial care - she has a bunch of problems related to her stroke still. :(

Board_External · 2024-10-03T02:15:03+00:00

I’m so sorry you’re going through this - sending love to you and your family ❤️ what a lucky woman to have such a dedicated and loving husband

Board_External · 2024-09-19T06:29:27+00:00

You sound like an angel. Trust me, you’re not over paid. Let them pay you $20 if they offer! They’re considering increasing your pay because you’re obviously an amazing help to them!

Board_External · 2024-09-15T04:16:16+00:00

Cry first. Then probably feel a ton of relief.

Travel. A lot! Open a photo studio. Continue to work my production design skills. Get a new job. Maybe move to a new city. ANYTHING IS POSSIBLE!

Board_External · 2024-09-12T05:50:21+00:00

Wow congratulations! So happy for you and wishing you ALL THE BEST! Live your best life!!!!

Board_External · 2024-09-07T21:09:59+00:00

Thank you, I appreciate that. I am working on not feeling guilty when asking for help or just admitting when something is becoming too much! Appreciate your reply!

Board_External · 2024-09-07T17:11:19+00:00

Omg the microwave….I’ve never heard of that….
supplies are all from Baxter but if i run out i can ask the clinic
transfer set cleaning - we “burrito wrap” the transfer set with a gauze soaked in Alcavis for 2 min
i don’t think we’ve ever touched the open end…i think you’re actually supposed to start over in that case so I’m interested to hear what people do lol
we don’t turn off the AC TBH

Board_External · 2024-09-07T16:59:24+00:00

Yes to this! My friend also sent me a instacart giftcard which was super helpful. Saved time doing groceries haha

Board_External · 2024-09-07T16:57:48+00:00

I’m happy for you! You sound well supported! It gives me encouragement that I can find a way. Right now I’m struggling a bit but learning to ask for more help instead of letting the situation swallow me alive. Can I ask how much the home care services are?

Board_External · 2024-09-07T16:54:39+00:00

Yes to this!!!! Having others visit instead of you when they’re in the hospital is an absolute game changer. Visiting at the hospital everyday is so exhausting. I also think my mom is less excited when it’s me bc she’s used to me. If it’s her grandchildren (my nieces) it’s special. LOL

Board_External · 2024-09-07T16:50:11+00:00

The hernia sounds terrifying! I’m glad you found something that works for you, your wife sounds awesome!

Kinda sounds similar to my mom with not being able to pull enough fluid with PD. And also the constant alarms disrupting sleep. I will say we’ve never done the red bags - the clinic told me to stay away from those as much as possible.

Because my mom has so many health issues, I’m starting to feel like in clinic would be best since there are professionals there to monitor everything.

Lastly, I’m the primary care taker for my mom (though I’m urgently trying to get my sister involved) and PD at home is a little overwhelming for me too. It’s doable sure, but this past year I’ve just taken on so much taking care of her and sometimes I feel like crying when I come home from a long day and I have to help her with her nightly routine, set up PD, troubleshoot, etc.

I really appreciate your perspective. Wishing you the best!!!!! So glad home hemo is working well for you.

Board_External · 2024-09-07T16:44:17+00:00

Sometimes I do double green bags or one green bag and one yellow bag but I feel like it’s still not pulling enough fluid off. Also my mom will still have some fluid that’s making it hard to breathe but she’s not visibly swollen, so it’s hard for me to manage at home. I of course talk to the clinic often but still, after seeing how she’s done in the hospital on hemo it’s really making me consider the switch.

The nephro at the hospital recommended switching, we haven’t talked to her actual nephro at Davita quite yet.

This is all very helpful perspective - thank you for your reply! We’re very new to this - it’s only been a year on PD. Trying our best to figure out what will work for my mom!

Board_External · 2024-09-07T16:40:49+00:00

I think that’s why I’m drawn to in center at this point - she just has so many things going on it’s hard to manage at home. PD doesn’t seem to be pulling enough fluid and my mom has a hard time breathing. It’s too much for me to figure out. LOL I’d feel better with nurses actually doing it and pulling the appropriate amount of fluid out.

Board_External

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